OhCecilia
Fibro/CFS folks - how did you get diagnosed? My Dr. told me she can't diagnose me because there are no definitive tests. I'm so confused. Based on my research, I was aware there were no definitive tests, but I also know Drs still diagnose regardless?
OhCecilia
I just want to know if I can put CFS or Fibro on my application for disability. I feel like she's being kind of pedantic. Also, honestly kind of feeling a bit mentally down about this whole thing. I've been trying to figure out what's wrong with me for almost my entire adult life. I've watched my health slowly decline. I'm finally at a point where I'm...
OhCecilia
trying so hard to push past my anxiety and depression and DO something about my situation and it's like trying to walk through molasses here.
OhCecilia
Not to mention, it really sucks to feel unheard and unseen. I just want some kind of acknowledgement that I'm not crazy.
hyasynth
They treat without an official diagnosis in my experience. Basically the neurologist I have now acknowledges the symptoms and treats those. I DO have a diagnosis from my previous doctor but it took 10 years to get there. It's still controversial and set aside. You aren't crazy but you are more likely to just get the medication to treat your pain, I'm sorry.
hyasynth
Having a medical trail for disability is going to be almost without "tests" or a history of treatment. (That goes for anything chronic like that.) The meds were literal magic for me, I went from being unable to lay on a surface to almost no pain with Lyrica (initially)
hyasynth
Can you convince her to try the first line medications for CFS or Fibro?
dkronfeld
You're not crazy; obviously something is wrong. Finding out what it is and how to deal with it may not be taking an ideal (or even marginally good) path, but you're not crazy.
hyasynth
I am "lucky" enough to have trigeminal neuralgia so the meds I take for that help treat the Fibro 75% of the time. I am so sorry it will make you feel crazy, and unseen and just ignored. You have to keep going through the molasses until you find the doctor that listens. :/
hyasynth
which is VERY hard when you feel like trash. (I'm calling myself trash here!) you can do it though!
OhCecilia
I've been seeing so many Drs over the years and I've talked about the pain and fatigue since the start. There should be records going back over 10 years on it. The really trying part is I have so many OTHER health issues where fatigue gets tied into it all. The pain is another story. My last PCP actually blamed my tender point pain on BAD POSTURE!
OhCecilia
I should have fired her right away but I don't want to be seen as a Dr Shopper type patient. I stuck it out with her until she fucked up my Covid treatment.
OhCecilia
hyasynth
: I don't know. I responded to her just now (portal message). And said that I know I can't get a definitive answer, just want to know for the purpose of disability as well as treatment especially in regards to seeing other specialists. I assume there may also be insurance things at play too. Like, insurance may not cover something without a
OhCecilia
diagnosis of Fibro or CFS (I'm leaning towards Fibro because recently the pain has become way more pronounced).
OhCecilia
I'm just really getting to a point where I need something in my life to change and improve and there's so little I have control over. I'm really trying hard but I don't know how much more I can try
hyasynth
Yeah the co-diagnosis with depression will absolutely get in the way too. Not that an SSRI has ever eased my pain. Get a referral for a Rheumatologist. Break what you need to do into little pieces so you feel like you are making some progress. <3 this is not an easy thing. Maybe tackle this after the housing nightmare?
OhCecilia
hyasynth
: not to be pedantic, but - depression, ADHD, sleep apnea, hypothyroidism, PCOS, and post covid syndrome. LOL.
OhCecilia
I moved 2 weeks ago, so that housing thing is sorted. I had seen a rheumatologist in the past but it was basically like... I dunno what's wrong with you and I was too afraid/shy to push the fibro thing with him.
OhCecilia
My physiatrist suggested cymbalta or effexor for the pain btw. They're SSNRIs
hyasynth
You are your best and only advocate. You are going to have to be forthright and ask for what you want. Be persistent. You might not get the answer you want right away but develop that relationship with a doctor so they really listen. It's sucks, but it's necessary especially with pain. "We need to figure out what's wrong with me."
hyasynth
I literally write down what I want to talk about. It doesn't always work but it helps keep things on track.
OhCecilia
hyasynth
: I know you're right. It's just so fucking hard sometimes. I responded to her last message and said to her, "if you don't think it's this, we need to figure out what it is because I can accept never being 100% but I need some kind of quality of life improvement"
hyasynth
It's ALWAYS fucking hard. I'm just good at making fucking hard look easy. :/
hyasynth
That's a good response!
hyasynth
They work for you! (Doctors that is.)
OhCecilia
Starfirez: I literally have nobody but George and he already is dealing with his Mom's cancer treatments. I can't ask him to help me too. He can't take the time off from work. Right now she gets treatment literally every fucking day
OhCecilia
hyasynth
: I do need to get better at notes though. I keep meaning to, but ironically, I always forget.
hyasynth
OhCecilia
: I do mine when I make the appointment and keep them in notes on my phone.
Dakota 🐦⬛🪵
I’m on cymbalta and I still have my chronic low grade headache/sinus but not sinus issues. My ent did a scan and saw nothing that warranted more investigation. I’ll try a neurologist next.
Dakota 🐦⬛🪵
I’m actually in favor of doctor shopping and second opinions.
Dakota 🐦⬛🪵
I’m trying to get audio processing disorder looked at even though I have normal hearing. I also didn’t know that it’s also something in the bipolar/depression spectrum. I’m less convinced though that I have ADD.
Dakota 🐦⬛🪵
Starfirez: I hate nasal sprays. I do a sinus rinse every so often but doesn’t help with the actual supraorbital pressure
Dakota 🐦⬛🪵
Sort of, but spays never feel good in my nasal cavity
OhCecilia
Dakota 🐦⬛🪵
: I don’t know that cymbalta is supposed to help with that kind of pain. Fibro pain is different
Dakota 🐦⬛🪵
Oh lol
✴Sparkling✴
Getting disability for fibro is really difficult, there are no tests. I have had it for over ten years, been to several specialists, and there is just nothing specific they can measure
✴Sparkling✴
I will echo what people have said here, you need a good rheumatologist who understands it and will work with you on it. My sister also has it, she has really great results with diet change and vitamins.
✴Sparkling✴
she has spent the last year cutting sugar to low or none, walks 45 min a day, and does a good multi, calcium and magnesium. She has said when she forgets taking the magnesium she notices the fibro pains flare up. I was just on the phone with her, and she got back her CBC results today, and the improvement was remarkable. Best lab tests she has had in years.
✴Sparkling✴
I find also sleep is one of the biggest triggers, when I have poor sleep, disrupted sleep, I am pretty much guaranteed to have a flare, the other thing that helps is light stretching. You have to find that point where you can get some exercise, and stretching where it will not trigger.
✴Sparkling✴
I always forget because I feel fine atm, and go beyond my limits, then pay the next few days. I have to remember to stop before I think I can, to prevent it.
OhCecilia
✴Sparkling✴
: I didn’t want it just for fibromyalgia, was hoping I could get it for both depression and fibro
OhCecilia
But thank you for all the other stuff you shared. Going to try another rheumatologist maybe