See Alike in...

Alike App

Browser

ZappyRacc

794d

Hi there! So, I've been worked up for suspected fibromyalgia for about a year now. While fibro is a great explanation for a lot of my symptoms, I'm also experiencing joint problems, including hypermobility and frequent subluxations in addition to tension and pain, poor wound healing time with stretch marks, oral ulcers, odd little rashes and skin lesions, severe chronic tachycardia (avg BPM of 95 according to 14 day Zio,) and appearance of multiple synovial cysts in my spine and legs. I just turned 28 and have been told my spine is about twice my age. My GP hasn't been helpful in validating my concerns, so I'm looking for a new one. Meanwhile, I'm curious, does anybody know of disorders which feature severe nerve and musculoskeletal pain in addition to the emergence of cysts? I've had basic autoimmune blood panels, only thing suspicious was high total serum IgA. I'm really wondering what might be going on and how to approach my next GP to make progress.

Top reply
    • ZappyRacc

      792d

      Appreciated. I for sure need a new care team in its entirety. My GP thought nothing of my tachycardia when I got the Zio off. He diagnosed me with fibro after I got an EMG and a couple MRIs ruling out nerve compression, and a couple blood tests ruled out the most common autoimmune conditions. He told me, as did a rheumatologist through their system when I went behind his back and asked for a rheum consult from another doctor through them, that rheumatology only treats clear inflammatory arthritis throughout their entire system of hospitals, leaving issues like fibro to be handled by primary care and psychiatry. My history of C-PTSD has not been helping me, because I keep getting told to tell my psychiatrist about my pain. Spent a lot of last year trying different meds. I've discovered virtually anything calling itself an antidepressant will at best do nothing positive and cause side-effects; can't do any drug in that class. I'm recommended ibuprofen every time I go in for pain, and this maddens me to no end because I've had a bad reaction to ibuprofen since I was a kid, and because I was sickly as a child, I was already at the point where the adult dose of Tylenol wasn't cutting it by the time I was 10. Doctors treat me like an addict looking for opioids when I tell them OTC pain meds don't help, and it's funny, cause most times I've gone to the ER, it's been for severe pain caused by inflammation or by muscle spasms, which are treatable non-psychoactively by a script for Prednisone or a strong shot of magnesium, respectively. I take 200mg of Lyrica along with 10mg Flexeril 3x/day. I also have a med card and go through a lot of cannabis. I remember the day I met a pain medicine specialist and dude ran through the list of possible meds, and when I told him I'd either tried or currently took everything on his list, he said "well, I'm not really supposed to say this considering I'm not a doctor who writes med cards, but have you tried weed gummies?" I laughed and told him I had been a heavy daily smoker since my senior year of university started in 2016. He then became one of probably a half dozen doctors at least by now to just kinda quietly go "oh.. and it's still this bad? Well.. shit, good luck, man." He was a nice dude, but this system of providers has continued to fail me, because luck doesn't give me back my lost ability to be on my feet for hours helping customers, or lift and carry boxes of merchandise or tubs of ice, and my vocational experience has been in retail and bars, so I've been trying to get by selling writing and "amateur adult art" online to keep my apartment and continue getting my meds. I know that, ultimately, the stress of not knowing how to be at a place where I can work again has been making all my tension worse. At the same time, I don't have a diagnosis SSI takes seriously, so I'm blocked from most government financial aid in the meantime. I'm in this weird place where I've been trying to hold onto a toxic relationship, which also doesn't help the tension, because I can't afford a place without living with somebody, and I don't want me and my cat on the streets. So it's been a lot of stress trying to figure out what's up, and I've been in this position where I know I'm gonna need a new doctor to move forward, but after a year of testing with this place I'm a little hesitant to just start all over again. As such, I'm trying to figure out how to approach a new GP, which symptoms to bring up and which ones are probably less immediately telling of a useful diagnosis.

    • ZappyRacc

      792d

      Appreciated. I for sure need a new care team in its entirety. My GP thought nothing of my tachycardia when I got the Zio off. He diagnosed me with fibro after I got an EMG and a couple MRIs ruling out nerve compression, and a couple blood tests ruled out the most common autoimmune conditions. He told me, as did a rheumatologist through their system when I went behind his back and asked for a rheum consult from another doctor through them, that rheumatology only treats clear inflammatory arthritis throughout their entire system of hospitals, leaving issues like fibro to be handled by primary care and psychiatry. My history of C-PTSD has not been helping me, because I keep getting told to tell my psychiatrist about my pain. Spent a lot of last year trying different meds. I've discovered virtually anything calling itself an antidepressant will at best do nothing positive and cause side-effects; can't do any drug in that class. I'm recommended ibuprofen every time I go in for pain, and this maddens me to no end because I've had a bad reaction to ibuprofen since I was a kid, and because I was sickly as a child, I was already at the point where the adult dose of Tylenol wasn't cutting it by the time I was 10. Doctors treat me like an addict looking for opioids when I tell them OTC pain meds don't help, and it's funny, cause most times I've gone to the ER, it's been for severe pain caused by inflammation or by muscle spasms, which are treatable non-psychoactively by a script for Prednisone or a strong shot of magnesium, respectively. I take 200mg of Lyrica along with 10mg Flexeril 3x/day. I also have a med card and go through a lot of cannabis. I remember the day I met a pain medicine specialist and dude ran through the list of possible meds, and when I told him I'd either tried or currently took everything on his list, he said "well, I'm not really supposed to say this considering I'm not a doctor who writes med cards, but have you tried weed gummies?" I laughed and told him I had been a heavy daily smoker since my senior year of university started in 2016. He then became one of probably a half dozen doctors at least by now to just kinda quietly go "oh.. and it's still this bad? Well.. shit, good luck, man." He was a nice dude, but this system of providers has continued to fail me, because luck doesn't give me back my lost ability to be on my feet for hours helping customers, or lift and carry boxes of merchandise or tubs of ice, and my vocational experience has been in retail and bars, so I've been trying to get by selling writing and "amateur adult art" online to keep my apartment and continue getting my meds. I know that, ultimately, the stress of not knowing how to be at a place where I can work again has been making all my tension worse. At the same time, I don't have a diagnosis SSI takes seriously, so I'm blocked from most government financial aid in the meantime. I'm in this weird place where I've been trying to hold onto a toxic relationship, which also doesn't help the tension, because I can't afford a place without living with somebody, and I don't want me and my cat on the streets. So it's been a lot of stress trying to figure out what's up, and I've been in this position where I know I'm gonna need a new doctor to move forward, but after a year of testing with this place I'm a little hesitant to just start all over again. As such, I'm trying to figure out how to approach a new GP, which symptoms to bring up and which ones are probably less immediately telling of a useful diagnosis.

    • Sickem

      794d

      Holy mother of God

    • kingseijuro

      794d

      oh jeez! I must have missed the tachycardia in your post. definitely ad a cardiologist to your list of you can, if it is rather consistent. but to save time and money if it isnt, I would recommend consulting with your pcp at least first. but you have pretty much all of my fibro symptoms. I'm sorry you cant do the testing! my rheumatologist was able to do it at his office, I must have gotten lucky. many people don't realize, but fibro is intermuscular, joint, AND nerve damage. this will be much more severe if your fibro suddenly appeared after an accident/traumatic injury of some sorts! considering how severe this seems to be, I would definitely recommend trying to speed up your diagnosis ASAP to get some meds. the longer you wait, the worse it'll be. i didnt get treatment for a very long time cause of a shit pediatrician rheumatologist and i will never get to where i was when i was diagnosed. your common meds for fibro will help your slippery joins, numbness, stiffness, etc. for the time being ask for a prescription of 800mg ibuprofen and a muscle relaxer. I take methocarbamol, which my rheumatologist said is the safest of muscle relaxers, and it works pretty well! I know you asked for symptoms that are the most concerning to me and I hope this helps. search like a mad man for a new rheumatologist. you need it! youre more than welcome to dm me if you need any more help! ps: what rheumatologist doesn't handle fibro?!?

    • ZappyRacc

      794d

      Thanks for the advice! A little more detail, for reference- My doctors agree EDS is suspicious, but the only way through their system of providers is to get genetic testing done, and the non-oncology genetics clinic is booked out for 2 years. I'm needing to find a new care team anyway; I mean, their rheumatology department doesn't even handle fibro. Symptoms: Constant fatigue and malaise unresolved with rest Muscle/joint weakness, sometimes causing me to fall or drop things Uncontrollable and often painful muscle spasms Sensitive to hot, cold, sometimes pressure Debilitating muscle, nerve, and joint pain Trigger points throughout body Migraines, TMJ issues, dental problems Abdominal tenderness, IBS and GERD, dysphagia Chronic dry mouth and dry eyes since long before I started smoking cannabis Tachycardia Morning stiffness in spine and knees, hands numb until the muscles around my thoracic spine relax Asthma, lots of childhood sinus and ear infections and allergies Adolescent-onset scoliosis, more recent MRIs show joint degeneration, dural ectasia and synovial cysts Stretch marks, poor wound healing time, multiple dermatological oddities (cystic acne, odd scars and rashes without explanation) Baker's Cyst behind left knee, multiple small cysts on right shin Brain fog, insomnia Numbness/tingling in most of my skin Fairly frequent (~3-5/week avg) subluxations, joints are "slippery" and unsteady Psych hx: C-PTSD, depression, OCD, anxiety, ADHD In high school, I got mono, and for 3 years it felt like the virus was raging through my system. I made better habits, working to overcome an eating disorder, doing martial arts for exercise, and correcting a severe and pervasive vitamin D deficiency. When I went to college, I started feeling much better. I spent time making friends, working on myself, and living pretty well. It was going pretty good till I tore a muscle in my back in my junior year. My insurance wasn't taken anywhere in over a hundred miles, so it healed poorly. Even still, that injury only really bothered me now and then when I was stressed or it got really cold. I still had a lot of fatigue and heat intolerance, but it wasn't anything I was too concerned about. I was working a management position about 3 years after I got my degree, and COVID reached my city. I was unlucky enough to catch it early. I was pretty sick for about 10 days, then I felt a lot better for awhile, aside from my asthma being kicked up a bit. But over the following two years, it has gotten progressively worse, such that I haven't been able to hold a job. I need to find a new healthcare team, and right now I'm mostly looking for directions in which to go. I can't really fit all my concerns in the short time of an appointment, so I want to know which symptoms are the biggest red flags to prioritize. Also, if you've read this far, thank you. I know I tend to go on a bit.

    • kingseijuro

      794d

      also! I also have horrible joint issues like you. it isnt common knowledge, but fibro IS a joint disease too. it is just not as common in less severe cases. at one point mine was so severe that walking around all day I could easily get 2 or 3 dislocations.

    • kingseijuro

      794d

      due to your mouth sores, you may want to talk to a GI doctor. that's a very common symptom for esophageal diseases like GERD and such.

    • kingseijuro

      794d

      in terms of EDS, due to the common occurrence of misdiagnosis, most rheumatologists won't diagnose it unless you have ALL symptoms, which you are missing stretchy skin. ^^^

    • Scarlet9904

      794d

      Um idk about the cysts but a lot of the other stuff sounded like ehlers danlos syndrome

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion