Health seems to be deteriorating: CSS? Fibro related?

Left atrial enlargement? Fibromyalgia related?
Hello all! I was diagnosed with Fibromyalgia, Central Sensitization Syndrome, Chronic Fatigue, Chronic Fatigue, and a few other diagnoses similar to these in January 2021 at Mayo Clinic, with addition to a suspected autoimmune disease but none diagnosed at the time. I went to Mayo Clinic for these diagnoses due to being misdiagnosed in my local city with Ankylosing Spondylitis- I had lost nearly 30 pounds and was severely underweight weighing almost 115 pounds (I’m in my mid 20’s).

Over the past 9 months I’ve experienced: double my chronic pain levels from head to toe, hypertension, skin discoloration that looks like livedo reticulitis from the top of my legs to my feet, odd weakening episodes of my right side of my body, additional weight gain, severe migraines, carpal tunnel right hand (now getting it on my left I believe), eye pain, facial pain, right chest pain, SEVERE fatigue, etc.

All of my tests are coming back normal besides this one ECG which shows left atrial enlargement and an ALMOST abnormal sinus tachycardia. My body feels like it’s falling apart. I know I need another trip to Mayo Clinic but I know we can understand how expensive the trips can be. My local doctors point everything back to fibromyalgia but I know there is more to it.

Any suggestions, ideas, or has anyone gone through something similar where I could get an idea of what direction to go in? I’m so stuck with what to do! Thank you in advanced!

...so sorry to read what you are going through, I have a long list of life-altering, if not life-ending, problems but was shocked when read you are so young (Iam 79)... to have so many issues at your age: can you go back to Mayo Clinic? I am in Canada and in a small town .. would so like to be able to visit Mayo with their excellent reputation. I wonder why local doctors are not too concerned, well maybe I don't wonder, as I have been brushed off by family doctors many times over the years (when I had cancer of cervix one said: its a hygiene problem)... hopefully someone here will be able to offer some suggestions in the meantime, good for you for knowing your body and that something is drastically wrong: I hope you get a proper diagnosis soon and some healing help. J.

Can you do a video Zoom with the Mayo doctors?
They have your records and you could call and ask if all the new symptoms can only be treated in person.

@fightingfibro0505, welcome!
I merged your 2 new discussions into one discussion to keep your story together. In addition to the responses you got from @timely and @lacy2, I'd like to tag fellow PRC graduations like @rwinney @boltz7555 @skier @tallyteresa @ldb to support you.

I'm glad that you have seen specialists to rule out any underlying medical issues and to have those addressed.
It sounds like you are facing a setback and could use some understanding helping hands to get over the mountain before you one step at a time. We're here.

I have learned that when you can lean on others, you simply do better. Please know that you are not alone. Sometimes, it all seems so unfair. We often ask, "Why did this happen to me?"No good answers, But, please push on.

You are truly staring at a forest of problems. Mine started with a spinal cord injury which led to Adhesive Arachnoiditis. In 2017, Mayo started talking about CSS. In 2019, we spent 90 minutes with an expert on the disorder. I was still doing OK. About 2 years ago, I started getting sick. I am down to 130 pounds, am 5'10". The past 12 months have been awful.

About a year ago, my ability to walk and stand without horrific pain came to an end. I have modified how long I can work before sitting down. That MODERATION thing is hard for someone who was once always on the move. After perhaps 14 or 15 visits to Rochester since August, we are finally beginning to understand what is happening to me. I believe that we should all understand everything we can about our challenges. It will help you in the long run as time passes. I have also changed our eating habits totally to gain more benefits of vegetables, fruit and trying to eliminate processed foods.

I guess what I am suggesting is that you try different things which might improve your overall physical and emotional health. I think??? It is helping me. Keep looking and don't give up. You will never find a single 100% solution to your challenges. Look for small things which make small improvements in your wellbeing. God bless your journey!

LarryB

Ugh!! Where to begin. I’m sorry you’re going through this so early. Mid twenties is when life starts getting more interesting. If it was me I would be calling the back of the insurance card for a list of local doctors in that field. Even some non local. Did you ask your PCP for a referral to a fresh doctor to just see. How old were you when they gave the diagnosis? If I may ask?

Hi @fightingfibro0505 I'm so sorry to hear what you're going through. Have you been to a neurologist? Have you been tested for small fiber neuropathy, POTS (autonomic dysfunction) and/or Sjögren's disease? Hang in there, I know it's a tough battle but keep being your own health advocate. We're here for you!

Thank you!! I am seeing a neurologist but they haven’t tested me for any of those 3 diseases. I am seeing a new neurologist locally at the end of June. Thank you again for the encouragement!

I can’t get insurance right now unfortunately. Hard to say I’ve been living with chronic pain for over 8 years. Diagnosed fibromyalgia and css for about 2

It’s hard with living with that kind of pain especially these days when we’re dealing with doctors and pharmaceutical companies that means ton of money in an opioid put them back harder for people like us that are in pain every day to get the medication they need. I take the nuycenta for my pain, which is not covered by insurance and it’s quite pricey to say the least have you tried gabapentin for your fibromyalgia. I’ve been through the phonebook basically all of pain management places on Long Island and nobody wants to prescribe me the right medication. It’s very hard to find the right doctors the right team. May I ask what state you are in? I’m just wondering because you said it’s hard for you to get insurance. Today was a bit of a hard day for me. I tried to get outside go out to work. I did three jobs, but I was having such bad spasms in my kidneys. I came home lay down in those lol I was able to do basically lol I just woke up . Do you have a good support system family friends that help you. Now I ask what you do for a living , fun, on your free time ? Do you like to read well? I hope you had a good day and looking forward to hearing back from you. Sincerely, Jeffrey.