u/Tashalynn406

3 yrs ago an excruciating medical nightmare began. (Not sure of relevance but had 3 c sections, single mom of 14, 17, 18 yr old. I also had a radical hysterectomy about 11 yrs ago due to extreme periods, iron deficiency, and severe endometriosis. Ovaries were also covered in scar tissue so removed) I was given little to no education on all of the possible side effects that that surgery would have in my life. It was then that I gained a significant amount of weight although I was not leading a very healthy lifestyle I didn’t change anything and gained 80-100 pounds within a year, . I was never thoroughly educated on hormone replacement therapy and I was put on a very small amount of oral estradiol. For a decade have had an estradiol level in the 15-20s or low 30s ever since and I’ve never been told that that is actually lower than it should be to prevent such things as osteoporosis, degenerative disc disease, etc. )I was then in the best shape of my adult life after being clean and sober long term (past meth/ opiate addict/alcoholic/ on and off smoker) . I lost 100 lbs in 10 months as I decided to adopt a “dirty keto” diet and became obsessed with exercise. I did hiit workouts regularly, lifted free weights, hiked a few miles a day, avid advanced snowboarder, etc. Im not sure how to keep this short. Symptoms first began in RUQ area as stabbing acute horrific throbbing pain, like an organ rupturing or something. I also began losing more weight , though effortlessly which does NOT happen to me. The pain resulted in repeated er trips to both the hospital in my town and neighboring town as I was treated pretty horrifically at my closest local ER. (I sure wish I did not have addiction an mental illness in my history as that has been the biggest hurdle-convincing providers I am not pill seeking, not faking etc) I have a high pain tolerance and this reduced me to screaming and crying to God to save me regularly in front of my children. Every scan under the sun was performed. I had long struggled with chronic constipation/ possible IBS, etc but was so used to that I just learned to deal with it naturally by eating as well as I could /exercise etc. GI symptoms worsened horrifically. All blood work and scans came back normal except slightly heightened liver enzymes. I also had hep c which I took medication and was cured (or in remission )around 10 yrs ago. Gallbladder scans came back normal , however HIDA scan revealed high ejection fraction - I was told hyperkinetic gallbladders can sometimes be the source of these symptoms and pain and agreed to gb removal. I will regret that decision forever. Immediately I awoke and knew that wasn’t it. The pre surgery pain was far worse, also was diagnosed with H pylori and put on horrible quad antibiotics for that which I took before and after gb removal. Gallbladder pathology was perfectly normal .For months I had extreme reflux that tasted like laundry soap, I was dismissed by my primary care as being depressed, hypochondriac etc. My pain then changed to feeling more structural especially in my ribs. I started to be unable to lie on either side of my body comfortably as my ribs seem to sublux underneath each other, and I had extreme pain in my rib cage, also wild, spasms nodules, etc. tons of knots throughout my coat hanger region in a along both sides of my spine, etc. I have had sciatica for 7+ years often on and was used to dealing with it also with exercise, stretching mobility, etc.. I begged my primary care doctor to have my ribs evaluated, and he acted like I was insane that my ribs could not possibly be causing any of my symptoms and that most likely my spine was the culprit. While acknowledging I would like a spinal work up and that I have had issues with my back, I insisted the debilitating pain that caused me to take FMLA from work was mainly throughout my rib cage.. I’ll note that growing up. I often had a wonky rib that would pop in and out during an activities such as toe touches. I really thought nothing of it since it didn’t hurt which sounds really dumb. I also wasn’t a health anxiety ridden, miserable chronic pain patient then though either. It took much begging and multiple different providers to find someone who would do thorough hormone, testing, nutrient, testing, etc. which I found out I had many deficiencies. My estrogen and testosterone were extremely low and I had nonexistent progesterone which I have always been told. I don’t need without a uterus and ovaries. I did find out I have kyphosis. I have been told three different degrees. I believe the last MRI red somewhere around 50° curve of my spine and some DDD. Other than the intermittent sciatica and some lower back pain, I really did not feel the focus should be on my back considering my rib cage was an absolute nightmare. I did a bunch of my own research, of course because I was absolutely denied and gaslit by so many providers. I had now have new set of PTSD and intense fear of clinical settings and doctors in general. I also have had hyperhidrosis since I was 12 a severe case which which I learned to live with over the last 30 years, but it is extreme and has affected my quality of life ever since. Hyperhidrosis as a normal healthy 12 year-old was my first introduction to be gaslit by doctors and completely neglected. I never did learn of any helpful treatments for that condition aside from getting an Iontophorosis device about five years ago which is essentially sending electric current through water into hands and feet, which paralyzes sweat glands and with dry hands and feet remainder of body also sweats less. Any other treatments for hyperhidrosis or medication medications that have horrific side effects. There are no cures. Anyhow. It is so difficult to retail the story and probably no one will read it because we’ll be eight novels long. I was so proud of my heart earned extremely strong body, good health, solid long-term sobriety, success in careers and helping others etc and have lost so much in these 3 plus yrs. I had more spine imaging done. I do have stenosis and lumbar disc degeneration at L4 and five and l5/s1.. was mild initially. With stenosis and mild spondylitis. I was basically told with physical therapy to address my spine issues I would be fine. I agreed to the physical therapy. I got injections in my thoracic spine that made my pain worse. I kept seeing different specialist and begging for my ribs to be evaluated and usually I would be completely ignored/gaslit/accused of seeking pain pills etc. I learned about slipping ribs syndrome via a Facebook support group. I became quite obsessed with desperately trying to figure out what was wrong with me so I could get my life back that I love so much. I ended up seeing a thoracic surgeon in Seattle, who I had found out about via slipping rib syndrome website and also Facebook. I flew to Seattle with my mom and was evaluated by him. He had apparently changed my CT scans that have been done locally to 3-D and explain that I had a healed fractured rib on the right side (6th I believe) that was sticking quite a bit farther out than it should’ve and I was explained that I had what appeared to be spaces between cartilage that should not be there, and that my intercostal nerves could be affected and impinged in healed in injuries and or cracks in cartilage in my ribs. I was convinced to consider a very invasive surgery in which he would clip off parts of some ribs, possibly resect an entire rib or more, then clean out any areas between the cartilage and untangle nerves, then basket weave sutures to stabilize the entire rib cage he also told me that my kyphosis was most likely due to the instability in my rib cage, not my spine and that if I do not get my rib cage fix my spinal issues will worsen. I got plane tickets and was to fly for pre-surgery appointment with him and decided at the last minute to cancel my flight with my mom, as I had learned of many, very poor surgery outcomes from this surgeon. Mainly women, but a couple of men were having to have revisions done and had new fractures because the sutures were too tight. Basically they were worse off than than before, and had an excruciating recovery from the surgery itself. I couldn’t imagine being any worse during this time. I also got on a hormone replacement therapy for the first time in my life from a natural path that insisted my estrogen should be much higher than it had been for a decade since my hysterectomy and recommended a very small amount of testosterone. After getting on these hormones and a very strict gastritis healing diet/supplement regiment I began feeling a little bit better and could start doing some of the things I used to do, although every single day of my life has been painful, I basically resigned to just trying to be as healthy as I could , do as much physical therapy as I could, etc., and see if my symptoms would just get better overtime when I would not need such a scary surgery. All of the rib symptoms come in flares where I will have horrific weeks or months and sometimes a few days here and there where I almost forget I have rib problems, although I have not been able to lie on my right side in over three years as it is worse than the left. I have not ever been able to return to my previous beloved HIIT workouts and exercise regimen, though I continued walking and making sure to do mobility workouts and move my body much every day. Now, in May, it will be a year since I woke up one day with new symptoms. I was at a Housing conference in another town and had gone on a long Bus tour of the city and had spent a lot of the previous day sitting in a very tight spot. I am 5 foot nine and was about 190 pounds at the time which surprisingly is a healthy weight for me. It sounds like it’s quite overweight, but I was lean and muscular and look the best I basically ever have in my adult life before all this. At that Housing conference I woke up in a hotel room with my legs weighing about 2000 metric tons and aching as if I had hiked Mount Everest the day before. I thought perhaps I was getting sick or I was just getting old and things were achy and it would go away. It has been a year in May and my leg symptoms have worsened much. My right leg, especially has had calf weakness, cramping, pins, and needles, intense knee pain, which I have had two sets of injections for even though they told me I had arthritis in the knee, but nothing serious. My thigh, especially in the back but often in front also feels constantly achey and painful and like I am having cramps, but I’m not. I get hip pain as well. I get all of these pains on both sides now but they’re generally worse on the right side still. New imaging of my lumbar spine has proven that my issues in that area have progressed and I have a moderate root impingement worse on the right side than the left. I was told by the spine doctor I was seeing that that could very well be the cause of my leg issues and then had more injections in my lumbar spine that gave me no relief and then had a neuropathy test, which they said I passed and that I do not have neuropathy. Previously to having that test, I had asked if a laminectomy might be an option for me in the future as my father had very similar lumbar MRI, weakness in both legs and had a very successful laminectomy surgery, which was minimally invasive, and he recovered from fantastically and has been great since. Spine doctor said that that could very well end up being an option but at my follow up appointment after having the nerve test and I was told that because I do not have neuropathy and that the injections I received did not give me relief that they could not offer me any surgical options they offered to send referrals to immunology, rheumatology, etc., which I already have referrals into from my newest primary care doctor because she believes that I might have fibromyalgia, EDS, etc although so far I’ve been told my blood work is normal for autoimmune issues and negative for alkalizing spondylitis. In research, I have done an pouring over experiences from people with similar MRI results as me, the right leg issues are quite common, so I was quite devastated that I was given no surgical options as this is now progressed to me being unable to work. I had a very high stress job when this all began working with the homeless population in Housing. I had an extremely huge client load and dealt with the extremely mentally ill often. I decided that the stress of the job might be contributing to my chronic pain and was offered a different position with a different organization, which would be similar, though not as high of stress and not as high of a caseload. Three weeks into the new job I realized that the chaos of my previous job actually had been keeping my pain at bay from what it could have been and I was exactly wrong. Also sitting or standing at my desk all day long at the new job was absolutely excruciating and I highly regretted leaving my previous job where at least was on the move a lot with many duties aside from sitting or standing at a desk/computer. At that point, I did start to seek pain management, and of course have been denied for any opioids from basically every provider I’ve ever seen because of my history of addiction. I had to quit my job as I could not stand the agony anymore. It has been four months since I worked, I’m terrified I will eventually lose everything. I was able to get six months of mortgage assistance and get on Medicaid and food stamps, which I never thought I would have to do again, but I’m grateful for. I had hoped taking some time off work would help me quickly come to a diagnosis and treatment plan to get my life back and be able to go back to work. I am nowhere near any sort of treatment plan. The spine doctor had seen for two years offered no surgical options, I then saw my father’s spine Doctor Who had done his laminectomy, who informed me, he cannot help me and referred me to a very well-known spine doctor for disc replacement surgery. The specific surgeon is well known for doing radical surgeries on almost any patient he ever sees a lot of people locally refer to him as a butcher and have had horrific results from surgeries from him. I was very surprised to be treated quite poorly from my father’s surgeon who really did not explain why i was not a candidate for a laminectomy, but would refer me for a much more invasive scary surgery. It was quite conflicting information than my previous spine. Doctor had told me which was that basically my spine issues are not causing my leg issues and to navigate rheumatology. I still have all of the issues with my ribs, being hypermobile and constantly in pain and feeling like they’re coming out of my back, but I am so used to that at this point I would do anything to have the normal use of my legs back. I recently read a story of a woman who was misdiagnosed for over a year and had blood clot issues in her legs, and I am wondering if I should get evaluated for that at this point I am scared to even ask doctors questions. My new primary care nurse practitioner seems kind and empathetic, however has not sent any referrals since I have seen her and it’s been a few months, does not know much about hormone replacement therapy and I can no longer afford the telehealth specialist that I have been seeing prior. I’ve been basically treating my hormones myself with the injectable E and T I was prescribed by a previous telehealth hormone specialist. Current NP added Prometrium 300 mg my stomach cannot tolerated it and it caused me extreme mental health issues and disrupted my sleep so she recommended rectal administration. I did attempt that for a month and my pain worsened as well as my gastrointestinal issues, worsened and my depression worsened so now I’m just doing 100 rectally of progesterone. I recently saw a pretty horrible story of a woman being misdiagnosed with fibromyalgia, etc., and ended up having had blood clots in her legs. I’m wondering if that is the next thing I should ask about even though I’m honestly terrified to even call my doctor at this point I have been up all night since my legs have been so bad. She is the only doctor in this nightmare Battle that has agreed to prescribe me low dose of a mild opioid pain medication which is extremely mildly helpful but better than nothing. Would it be possible to have blood clots in my legs for almost a year and not know it? And not have ever had a doctor recommend checking for them since my leg symptoms started last May? If anyone has any advice of any of my other issues it would be greatly appreciated. I lost my relationship of 3 1/2 years during this health battle. I have lost the respect of many family members who don’t believe my issues are real or that I am exaggerating them, that I am possibly slipping into old habits, etc. I have lost faith in myself. I am terrified of losing my home that I was so proud to achieve five years ago, etc. I spent my life savings on naturopaths, massage, chiropractic, hormone therapist, physical therapy devices, meeting deductibles, massage etc., until I finally could not work anymore and got on Medicaid. A friend has suggested I apply for disability, which sounds absolutely devastating but at this point I I cannot work. I attempted to just start a part-time job printing T-shirts at a friends shop and could not even handle three hours of running a T-shirt press and stepping to the right to put the shirts as it inflamed all my issues horrifically. It really sucks that so many of us have to look to reddit and or Facebook, etc., for experience and advice because it is so difficult to get any of the providers that I have seen to be willing to take my situation seriously and at times I have started to believe that I deserve to be in this much pain every day of my life because of the past poor choices that I made in younger years. My kids really need me to not give up and I’m doing my best. I could really use a little bit of hope.