1. Oh we still don't know. I was supposed to see my rheumatologist today but he got covid so I have to wait until September. But hopefully next month I can get some answers. They did give me a nerve block injection that did nothing but make me sick and give me more pain. But that's it. We don't know what's up yet.

  2. Thanks I'm going threw a similar situation and it's been rough still have no answers also I'm in alot of pain

  3. Damn :/ I'm sorry you're going through this but don't give up and always advocate for yourself! I hope you get answers soon!

  4. I was on 60 for years, felt like shit. Decided it wasn’t working and my doc told me to step down slowly because of withdrawals. I had so much trouble going to 0, I stayed at 30. And it works so much better for me at 30, it’s ridiculous. Bonus is that we never actually changed the script so I have a huge apocalypse stockpile.

  5. Lol that's how I am with my gabapentin "apocalypse stockpile" lmao

  6. 100% worth it. They helped so much. My dr increased the dosage to deal with my depression as well so it's not just a pain level I was on.

  7. I personally could not deal with the side effects of Cymbalta. The nausea turned into vomiting and the insomnia was rough. I actually started Wellbutrin for pain, depression and ADHD. I'd say if you can hold on with Cymbalta, then do that. But there are other options.

  8. I know a few people who have not had good experiences at his institutions unfortunately. But I don’t think they’re actually run by him, I think they just follow his model? I’m not 100% though. If I had to recommend a DID hospital it would be Sheppard Pratt at Baltimore MD or Dominion in Falls Church VA

  9. They are run by him. There is/was a session once a week where 1 of the patients would basically talk to him for an hour. I've done it like twice back in 2015 and I've seen it again in 2021 in Texas. I went there is 2021 in Texas and it was alot more mellower than in Cali in 2015. In 2015 we'd sit in a group and have to hear about someone's trauma in detail and validate them and stuff. The validating was fine but the hearing detailed trauma really fucked me up in so many ways. I was just starting to deal with my PTSD and that unit made it alot worse because I had no real guidance on what to do. Now Texas in 2021 really helped me because one of the therapists there was awesome and helped me out so much. Like this dude was GOOD. It was kind of a shitshow because there was a new director that knew nothing about PTSD/DID and she was an asshole. If someone made a complaint about her she was intimidate them one on one and be more rude with them. They left me without my mood stabilizer for a whole day, half of my clothes got "lost" (they actually reimbursed me), and a few other things. But believe it or not those issues were cake compared to the psych wards in Louisiana. But sometimes I feel like Colin Ross created something in me that I mightve not had before 2015. I was diagnosed DID last year but sometimes I think he played some fucked up mind trick and now I can't shut it off. I dunno. It's all a mind fuck.

  10. I get dizzy & off balance sometimes. Feel like I'm in a tunnel, everything just feels off. It's not necessarily after any particular treatment or meds. Some of my meds have this side effect, but I've been on them for a long time. I think its just happens when my body/brain has had enough. I have the hardest time in the mornings. It usually passes by the afternoon, esp. If I lay back down to rest for a few hours. My mom gets this a little bit too. We both have fibro & lupus. Mom has RA too & dr thinks I do too, but I don't have the RF factor yet.

  11. Yea, mine is worse at night. They are resisting diagnosing with fibromyalga or CRPS and I don't know why because I've taken almost all of the tests. It's frustrating and my body is exhausted.

  12. I'm genuinely curious what it is that you wish could happen differently? You are saying your whole body is in severe pain. You're saying you've done all the tests. It sounds like you've tried all kinds of pain meds, you have a pain management teams and you've tried local anesthetics, and nothing is working. We can deduce, there is nothing that a doctor can do. What good will diagnosing you with one thing or another doe? Your symptoms of full body pain, refractory to any treatment, and undiagnosed with any tests, does not fit the diagnostic criteria of either of those things. What more can the hospital or doctors do for you? All they can do at this point is help you if you are critically ill. I hope that doesn't happen to you. It seems like your only options at this point are to cope with your symptoms, you yourself said, nothing works, they've tried everything, and you still have full body pain. There is no miracle fix. What more would you like to be done?

  13. Wow, you sound like a doctor. I'm not looking for a miracle fix, I'm looking for answers to understand what is going on with me. There is 1 med that helps with my pain and I do feel like there is more they can do. They can listen to me instead of dismissing me. I get they are trying that method to help with my pain but they don't get that I am still trying to figure this out. They haven't done an MRI on my whole body they haven't done all the blood tests. I'm seeing a rheumatologist next week. My question was has anyone experienced this. So please back up a bit. I'm going to exhaust all Avenues until there are no more to go. I'm not gonna lay there because living with this pain is horrible and honestly there should be no reason for it. I had no history of this until a foot operation. And it's progressed to sometimes full body pain and not just my legs. So hope this answered your question since you seem just as dismissive as they are.

  14. I want to thank everyone for the support and personal experiences! It means alot. Where I live it's stuck in the 1950s and there isn't alot of support for me issues. So I really appreciate this. 💜💜💜

  15. I’m the same way, but I’m not diagnosed with OSDD (just questioning and trying to find a psychologist). It’s a huge pain in the ass. I’m currently unemployed after I got fired for missing two days (I was extremely ill and my doctor told me to rest two days, I had a note saying so) and I can’t get back on my feet. I’ve been disassociating more and I barely remember the last month at all. So I can relate, at least somewhat.

  16. Yea I was diagnosed as DID at a PTSD unit last year only because I'd have blackouts when I was younger. Now my symptoms are on the more OSDD scale. I'm sorry that happened though. But yea, it's rough and is hard to function and stay positive sometimes. But I try.

  17. It's like this in New Orleans... there are no in person meetings. So I created one. Our first meeting is on Thursday and I'm nervous. But I'd suggest LA, it has alot of all kinds of meetings. Also, if you can't move try an SAA meeting. Is very close to SLAA and it's something.

  18. A question for you? Do you know if you have a headspace/inner world? If not this could very well be your inner world. It could be you just getting disconnected from the front and entering the inner world. If you already know what your inner world looks like this might be a different place in the inner world. When you get there maybe try looking around a bit more and finding out if it's really only a dark room or maybe there's more to it.

  19. Thank you! My inner world has alot of different parts to it and then my main alters have theirs as well. Yea, I was scared it's another part of it. I just feel so scared when I can literally feel me pull me in. It makes me feel crazy. Like I feel like my eyes rolling in the back of my head when it happens (and not in a good way). Almost feel possessed. I have alot of spiritual trauma and I'm scared that I also have a demon alter and I've been afraid of finding out. But yea, depersonalization is an issue for me. I knew it was partly that. Good thing is I see my new EMDR therapist soon! So I hope to get more help there. Thank you for that advice and I'm sorry I avoided pressed the arrow down, but I fixed it!

  20. We also have non-human alters. Yes demon alters might be scary but they're not there for harm. You're not possessed and I am sorry if anyone ever made you feel like you are. You'll slowly learn to accept your system and I think letting go of the front will become less scary. I am happy that you're seeing a new therapist soon and I hope they'll help!

  21. I don't know what it is honestly. I have spiritual and religious trauma that is so hard to put into words from my past. So my beliefs of what it might be are are very conflicted. I flipped the script in the dark room and I changed it to my happy place. I know it's telling me to look at some stuff and I am. I know I have basically an angel alter. She doesn't have wings but she's pure light with these big cat eyes that are just a glowing blue. I used to totally let alters front when I was little but now I won't let them completely. I basically blacked out for a split second last night and almost ruined a very safe friendship and that scared me. I feel like I've been maybe blacking out (in minutes) recently but nothing crazy happens. I just can't (knowingly) give up the control of being up front. I can't fight them when they want to front of give them very limited access. I control what they do and say to an extent but it is sometimes exhausting and gives me major anxiety. I dunno why I went on that rant but you mentioning feeling okay with them fronting triggered that. I just HAVE to be in control. And it frustrates them. (I'm diagnosed DID but I have more symptoms now more mellow on the OSDD range. They only wanna front when I'm under too much stress or they are mentioned).

  22. I'm so broke right now and I focus on getting stuff with high protein. Also, I have a sodium issue so I got have salty and if I need calories I eat Ramen noodles. I'm getting very strategic now with food since I'm so broke. And getting some Gatorade or the packets to stay up on electrolytes. I had a scare when my blood results came back so low on stuff I was close to having to get a sodium water IV in the ER. So I make sure if I eat 1 meal it's packed with protein and I have a snack too. The struggle is real.

  23. Thank you all so much! I think I mightve found a sponsor so we will see how it goes!

  24. Join the SLAAvirtual helpline on WhatsApp. We can direct you to a WAG where there are people who can and do sponsor.

  25. So they removed me from the group for some reason and now I can't get back in even after deleting the group on whatsapp. I didn't do anything inappropriate...I just asked for help finding chats a few days ago. I don't know what's going on :(

  26. You take your dose all at once or split in the day?

  27. My completion has gotten so much better that I get compliments from strangers, I've lost a little over 10lbs and it has helped with my depression. I really like this med

  28. Maybe write a list of the reasons why it would be better off that you have no contact with him, and any time you feel like contacting him, read that list to remind yourself. Also, it sounds like you need more support than what your sponsor is able to offer. If you go on the SLAA website, there are WhatsApp groups you can join for support during moments like this.

  29. Thank you so much! I'm going to write that list and I'm going to check out the whatsapp group. Yea, my friend in AA took me off the ledge but I do need more support. I'm trying to create an in-person meeting here because where I live we don't have one and zoom meetings have not been helpful for me.

  30. If you haven’t found the zoom meetings helpful, try some new ones after you join the WhatsApp groups. They’re all slightly different, you may just need to try others until it feels like the right one for you.

  31. You're right, and this was a big wake up call for me. Thank yoh so much! You have been such a big help!

  32. I did at one point and just realizing this is the first step to being more of an authentic you. This is my approach that some would be against but it is not THE approach. I have a belief in a general higher power (universe,trees all that jazz) and I ask my higher power everyday "show me what l need to see" and since I've started that recently I feel like my life and understanding of such has accelerated so much! I am having epiphanies like a few times a week and waking up more and more. But be careful because if you ask you will receive! And for people who are less toward spirituality (not religion) it is the law of attraction. The energy we put out is usually the energy we receive back in my observation. And question everything! Never stop questioning because it allows you to be open to new ideas and possibilities. But also in baby step form start making your bed. I know it sounds dumb and simple but it's little changes that can open more doors and bigger and bigger things to help you in your path to self discovery. :)

  33. In high-school I used to do tarot and I brought them to school and did reading for some of the other kids. It was whatever and then I did this reading for this one guy. I had a very bad feeling and I honestly felt like something (internally not audibly) was talking to me. I told him about something bad that was going to happen and it's going to be lifechanging and he might move. Fast forward to maybe a month or so later his dad ended up in the hospital (possible passed away I forgot) and he had to move away. This scared the crap out of me because I only did tarot for fun and did not feel that inner communication with the other people as I did with him. It kind of freaked me out. I hope he's okay now. (It's been about 17 years since then).

  34. I've been on it for a few months and it's helped with: my weight, complexion and depression. I am not able to take antidepressants and I thought there was no hope for help with my depressive episodes. I was about to do ECT but now I don't think it's needed. My hormones were the biggest cause of my depression! I still have my ups and downs but not as bad. I need blood work to check my potassium and I get a bit of anxiety...but it's not bad anxiety. I like it very much fingers crossed my potassium is okay because I really don't wanna stop taking it. It's been a godsend. I even got complimented on my complexion by a stranger. I'm also see less dark skin pigmentation on my face, especially my upper lip. I'm grateful I found something that works. And it's only month 2 I think!

  35. Wow reading your comment has made me reconsider and try spiro again. I tried it a year ago but it made me so sleepy all the time. I’ve had the worst time with depression and tried so many meds in the past 12 years, I even had the genetic testing done but even the meds on the good side made me suicidal. If you don’t mind me asking, why do you say you can’t take antidepressants?

  36. Because I get all the side effects, gives me severe anxiety and I've gotten serotonin syndrome about 3 times. I'm on Trileptal that works but I can't go any higher than 150mg because my sodium plummets when it's any higher. That's why I'm worried about my potassium. I think I have something autoimmune because I suffer with chronic neuropathy and pain that has spread to all over my body sometimes but all my tests are normal. So my body has just been working weird the past 2 years.

  37. I also feel I should mention that my anxiety has gotten quite a bit worse since starting Spiro so that hasn't helped my appetite at all.

  38. I just posted the same thing about the anxiety issue since being on it. I thought it was the summer heat here in the south but my anxiety has been higher as well since starting the med.

  39. I have been on it for a month and my appetite is almost non existent. It is very hot where I live and the heat causes anxiety and lack of appetite, but I have lost like 9lbs already. I can tell my face has gotten thinner and my clothes fit alot better now. It's great and all but I know 1 maybe 2 meals a day isn't really healthy but I'm just not hungry. It's interesting I'm not the only one going through this on this med. I can tell ya, I'm used to weight gain on meds...not weight loss lol.

  40. An EMG is a procedure where they first sick your legs to see if theirs signal then they put skinny needles in your muscle took see if your muscles function correctly. I had 2 tests show I had an abnormality before so they think it a small nerve that's damaged that causes alot of pain. They are saying it's either CRPS which is an issue of how your brain processes nerves or fibromyalga... which means they don't know. I can say I agree with the ER doc when he said it looks like I have an inflammation disorder which is autoimmune. It's rough because on paper I look healthy and fine but I feel like my body is attacking itself and killing me in the process.

  41. I can’t take tramadol I take a reaction to them. I’m done surgery and I’m back to myself mostly I’m sorry you are going through this. Surgery was the best option for me the nerve pain is gone

  42. May I ask what type of surgery? The issue is my first EMG last year was wrong. They said my sensory nerves have no signal but the EMG I did last week found the signal my sensory nerves were just hard to find. So my results came back normal on my arms and legs which is baffling because I struggle very bad with neuropathy. He said my smaller nerves might be damaged which causes alot of pain.im sorry tramadol doesn't work. It is the only thing that takes the nerve pain away without me having a bad reaction to it and I don't have to take it if I don't need it. I had a meltdown at the ER tonight. They treated me like shit and gave me toradol that did NOTHING. I can barely walk right now. So I told the nurse that I'm tired of tiptoeing around Dr's and I'm not a drug seeker I'm just scared and in alot of pain. They ended up just giving me 100mg of tramadol but I'm happy I finally stuck up for myself. They were gonna give me visteril for pain and I told them that's insane because it's a antihistamine and it doesn't work for nerve pain and spasms. 150mg of tramadol later and it's mellowed but I'm still in alot of pain. All my tests come back normal and no one can figure it out. Its just my word they have to trust and most Dr's don't trust that. I have adverse reactions to everything I need and I'm exhausted. And every time I get a surgery or procedure my body flares up and the pain is unbearable. I think I have an autoimmune disorder but they can't figure it out. Sorry...I'm just scared and it's making me depressed.

  43. If you have BPD and he is autistic, while it can work, it's pretty much a neurodivergent pairing made from hell. Chances are you will end up feeling like you are not understood, and you would be right: most people on the spectrum (myself included) would have a lot of trouble to understand the emotions of someone with BPD. We tend to only understand emotions in a crude way, and are seldom equipped to understand the world through the emotional nuance people with BPD usually perceive.

  44. Also I'm usually okay with people being blunt I'm a bit blunt (hence not being afraid to ask guys out) and sometimes it throws people off. I had to learn to think before I speak

  45. I'm trying to trust what he is saying and not expect anything further than friendship from him. It's just confusing to me because he gave me every signal that he was interested. I think for him he has a bit of trauma too...he touched on it a little when we talked last. It's just baffling. We can talk for hours, he even did slight physical contact once (it was a hand on my shoulder but most guys don't do that), he takes time out for me and everything. I have my BPD mainly under control. He even calmed me down when I was feeling passionate about something. I feel like I'm in an endless cycle of men who treat me as if but never want to go further than friends. Which is another issue all together...ugh...

  46. Oh God...usually the guys that claim to the the "nice guy" like this are the WORST!! Ugh...

  47. Uhh...this reminds me of a dead persons leg. Please go to the ER this looks VERY serious!!!

  48. Hi i had exactly the same as you and my cause turned out to be b12 deficiency. Get a blood test for that

  49. Ive already gotten a test for that and my b12 was really good actually.

  50. Entrapped nerve on one foot causes bilateral trouble. It was described on youtube by the stanford pain management/ neuropathy specialist who described almost that exact situation arising from a hangnail removal.

  51. Yea as much as my podiatrist saying that my bunonectomy did not cause this I have an issue believing that. This surgery involved 8 screws and 2 plates and was one of the biggest bunionectomies ive ever heard of. I know its on both legs but I do think it was the surgery.

  52. I thought I was alone. I can't even explain how intense my senses can be and how vivid the images in my head are. I feel very connected spiritually. I feel like I am connected with nature on a level I can't even explain. I have the issue that when I try to explain it I "turtle" and snap myself out of that feeling. I get ashamed and annoyed. I do write poetry but I have yet to find a job that works for me. I liked software testing because I can listen to music while I work and just zone out in my work. But you are not alone and im happy I found this thread :)

  53. There are strictly men's and women's meetings as well. I try and stay away from the mixed meetings.

  54. I just got one from a dude that claims to be Zak from Ghost Adventures...asked how my family was...which I find weird. It's sad...people are sad. I try to not add anyone I don't know on Instagram and Facebook because they WILL message you and will try and date/catfish. They should just do Facebook dating if that's their motive. Or Tinder...there's so many other other options!!!

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