What are your thoughts on reiki and chronic illness, specifically fibromyalgia and borderline hEDS? How often does someone with these conditions need to attend reiki sessions? I felt really good after my first ever session but then the pain flared up again pretty bad. Just curious if I should keep trying it for an extended period of time.
Because of health reasons and I had a really difficult pregnancy with Hg. There is the smallest part of me in a delusional land that thinks maybe we could have another but majority of me feels I am one and done. My husband says he supports whatever I decide. It is difficult when you don’t have the full option BUT I feel so lucky that we have her. Truly. But also, I feel like I want to be the best mom I can be for her .. and I feel I can do and be that with just her. She had dance today and maybe it’s my pms sorry if this is mean but the screaming, crawling, crying babies and toddlers.. I’m just so far removed from it and was just so happy to scoop her up after and grab dunks together. Even though being a parent isn’t easy.. I do just love what we have going. I hope it will be enough for her.. but she has the best personality for an only child. Just some random one and done thoughts this morning.
I also just feel this little struggle with other parents that have multiple children or more than one that we do live different lives.. and I try to empathize and be open to what they have to say, even though there is a part of me that feels like they’re judging me for having just one but.. we all can make our own decisions which is nice. I don’t want to have another child just for the sake of having one and putting my health even more at risk. If that door even opens.. I’ll cross it when I get there. But I think deep down I know this is it for me. I selfishly love that we have just our daughter.
There is a woman in our town that does reiki, inner child healing, polarity, massages, etc. my husband made me an appointment and I went for him and for myself today because what did I have to lose. I do have some childhood trauma that resurfaced post partum for me. Not all but pieces. Two years post partum is when everything in my body started to go down hill. Developed multiple injuries, diagnosed with fibromyalgia, the symptoms started to snowball ones the injuries occurred in 2024. I am just curious thoughts and experiences. I don’t think this will heal me if I am being honest, I lean more towards God and I just don’t know how to feel about it to be honest. Curious anyone’s thoughts or experiences with chronic illness. Thank you!
Has anyone had any luck with a therapist for their chronic pain and health conditions? I was seeing a therapist for EMDR and I loved her, but she only does EMDR I am pretty sure. Curious what you have looked for in therapist for fibromyalgia. I think it would be helpful to have someone to talk to regularly for my own mental health and sanity 🫠 it seems hard to find a good therapist from my experience
Hi! I’ve been on and off escitalopram for 10+ years. Every-time I go on it, I gain 30 lbs and it always creeps up on me. It doesn’t happen until months 8+ and it rapidly creeps up. I have chronic pain and illness/ a lot of health issues and it helps with my pain and mental health. I wanted to know, has anyone been successful on here watching what they eat and tracking or what advice would you have? I swear my stomach because a black hole and I can eat and eat and eat on it and feel nothing. And I clearly don’t know how to stop or have thoughts of my own without all the extra food noise. I just don’t know what else to do and it’s the only medication that works well for me other than the weight gain. Because of my health problems, I can’t workout. I can’t even walk long distances.. I know .. but it’s just my reality.
I find this group to be one of the most kind and supportive groups. So just a minute of gratitude for that.
I need to rant for a second. I saw a geneticist yesterday and was told I have heds, I’m not textbook but with all my health and medical history, I was diagnosed with that and MCAS.
I don’t want to cry. I’m just looking at my calendar and made a couple calls. But if feels like I am constantly running around to the doctors, getting scans, follow ups, etc. and it’s just overwhelming while also living in severe chronic pain.
I think I need to get back on anxiety meds again, I always gain about 30lbs and the only med that works well for me is escitalopram. I’m just feeling bummed and trapped and I have for a while now. Chronic pain and living with fibromyalgia can feel so isolating. I feel like I am burden to my husband. I worry how this will impact my daughter. I know I am currently spiraling. I feel like my mind will do this and then the pain flares and the best way I can describe it to my husband is that it literally starts to ping pong. I always say I feel crazy if I was to explain to someone every bit of pain I am experiencing and where in my body at the same time.
Does anyone have advice for when they have times and moments like this? What helps you? I also feel like I need to get a specific medical notebook, folder, planner.. something. I just have such trouble focusing and I am constantly making random lists on my phone and it all gets jumbled.
Anyway - words of encouragement? What are you thoughts on fibro and eds?
I also have stomach issues but scans are coming back fine so far which is so confusing. That has been going on since last October. Deep stabbing in upper right quadrant and it radiants to my other rib and down by my belly button. Anyway. Part of me is wondering if I should get on a glp1 to manage my weight while on escitalopram. I am just worried I already have so many issues - would that add more just to make me feel better in my skin while on the medication. I am also worried that I can’t workout right now because of my injuries. I can’t even “walk” as a workout, let alone weight lift which stinks. Unless my pt gives me very easy, simple, light weights and I just accommodate all my issues and injuries.
I have some brooks and custom orthotics and might buy some Hokas this fall for everyday/ out of the house. But I am a big slipper girl. Any suggestions?
Has anyone seen him as an adult? What was your outcome and recovery like? Currently seeing a podiatrist but I have a boat load of health issues. If I under go another surgery, I want to feel 1000% confident the way I did with my hip guy. Thanks!
For reference, 32F
I have an appointment with Aubrey Milunsky Monday and I am panicked on preparation. How do I best prepare? What information about myself and family medical history will I need? I have read about the testing and mixed reviews. Is this something that I can wait to do when we have the funds? It’s a lot upfront. Curious all and any thoughts/experiences. Feeling nervous but it’s time to get some help/answers.
Is he going to ask why I am there or just a bunch of questions and I will end up unraveling my health problems and surgeries? Thanks in advance.
What have you found to be helpful lowering stress and fight or flight? Open to all/any ideas. Do you find it hard sometimes with so much information out there how to decide okay, this is what I am going to do/try and this is my plan? I feel so fragile at times with my fibro and I recently saw a new physical therapist for many on going issues and problems and he was talking to me about postural PT, pelvic floor PT and I am doing 90/90 diagrammatic breathing exercises until I see him again. I thought it was woo woo and ridiculous but did my first set yesterday and he kept taking about fight or flight during my evaluation (took everything in me not to dump on him my fibro me potential childhood trauma/ he already knew about the injury trauma to my body.. “injury” who knows) had me thinking, wow my body is on edge 24/7 and then some.. I have heard about how the body keeps score. Anyway, any tips, advice.. I feel this big amount of pressure to figure out my diet, routine, hobbies to relax and get it all right and then it just makes me spiral and get decision fatigue and then end up doing nothing to “help” myself if that even makes sense.
Im also a mom of a most 4.5 year old. I love her to pieces and I feel so lucky she is even mine. It’s just hard to live with chronic pain and problems. I just feel so drained every appointment, new provider, problems, etc. just looking for some words of encouragement, support.. anything that has helped you to lead a better quality of life. I think it’s time that mine needs a big up haul.
Looking for pillow recommendations for cervical neck and head pain as well as tight shoulder and trap muscles in that general area. Thank you!
Being told the only place is Cambridge genetics for potential hEDS, connective tissue and or collagen disorder. Been gaslit twice now by the same rheumatologist office. Just curious how people are getting tested and diagnosed. Thanks! Also if anyone has been to Cambridge genetics please chime in - their reviews are mortifying.
Also was told today that umass in Worcester doesn’t accept patients for connective tissue because basically “everyone has it” or suspects their have it. So bizarre. Any insight would be great. Thanks again!
I am switching PT’s. I had the same PT for my left hip and saw him again for right. We were very conservative. This second hip has gone much smoother than the first, healing time is a lot different too. I have a PT protocol from my doctor but all I have done and I kind of backed off because of a recent flare and then was in a wedding so I didn’t want to aggravate anymore. My current PT basically just wanted to get me walking with each hip and has just sent me home with the same three excercises. I have done bridges with a band, clam shells, I was doing the bike but because of an ankle injury it was causing a lot of knee and ankle pain. So I backed off. I was doing some core. Not full sit ups but targeting lower abs. Anyway, after 2+ years of over compensating. I am trying to find a PT to do a gait analysis and help me figure out compensation and correct it. Has anyone had similar issues? I am also so paranoid that a new PT will eff up my hip or recovery. Any positive advice would be appreciated. I used to workout and be active but haven’t in two plus years because of these injuries.. I can feel my body off balance. Just look for some hope and positive stories. Thanks!
Also, has anyone had compensation pain in their back? Everything is just very off and I am hoping to get some help. Any advice what you have found helpful with finding a PT please let me know. Idk why I am worried they are going to mess something up. I just haven’t had the best luck with PT’s when I was doing it before deciding on surgery.
I should add I have tarsal coalition in my right ankle - something I was born with but wondering if the years of compensating has put more stress on it to cause the ankle pain. If anyone else has this as well as an adult, pls feel free to chime in.
Hi! I was recently told by a podiatrist he believes I have tarsal coalition. A year ago, I saw a PA at BBJI and she noticed the bones (I saw her for severe ankle and heal pain post op from left hip arthroscopy). Fast forward, I had my right hip done this spring and I am having still such bad ankle pain. My sister recommended a podiatrist in the area and immediately he was able to diagnose the problem. I have an mri in two weeks to see more/how bad it is. He said surgery is ultimately the only thing and he wouldn’t wait over a year. My question is, do you have any recommendations for doctors in MA? I am knew to this and have been dealing with my hips for 2+ years and I have no idea if I should be seeing a Podiatrist or a Foot and Ankle Orthopedic Surgeon. I am kind of annoyed that the PA brushes off my pain and problem. After I met with the podiatrist a couple of weeks ago, I went back to look at my notes and in my notes she said that we needed to do further imaging but she never discussed this with me. She just said that’s how my bones are and they weren’t causing the pain. So I am apprehensive about going to BBJI but I did see their hip preservation specialist there and I felt very confident in his ability to do my hip surgery.
Just have zero idea who to meet with or feel confident in because this seems like such a unique problem.