So sorry to hear this! It definitely sounds like you are doing all you can to take care of yourself. The only thing I would suggest considering is the idea that fibromyalgia is an actual diagnosis. Yes, it is a diagnosis of exclusion, which means we must exclude other possibilities before settling on that diagnosis, and yes, it is an imperfect, ill-defined diagnosis. BUT if testing has been done and have been inconclusive, it may be worthwhile considering this diagnosis and it's associated treatments. It is true that 2nd opinions can be disappointing, but having another pair of eyes review your results, talk with you and examine you, I believe, is always a good idea. If they come up with new ideas - that's great! If they come to the same conclusion as your other doctors - that can be great too as we can feel more confident in the opinions we are getting if they are largely the same. Hang in there!

Read the book “How I healed my arthritis”.

@@ConnectedRheumatology Steroids cause fibromyagia to the Brain if that makes any sense at all? Thank you at most we need more like you if thier is a carring God and not a evil one who seems to control .

I feel your pain! Me too

I can understand why you need suger caffeine to help keep us up going as much as possible. i switched to Honey a few years ago .

So frustrating, I know. For the doctors too. Hang in there and don’t stop pushing your docs to keep thinking outside the box!

You can't get a diagnosed is a great topic. its a silent way to keep the half dead asleep in thier nightmare. its torture worse than nazi germany. at least they knew what was happening to them.

Did you have covid vaccine before it started ?

@@konstantinaskoula1266 Now your adrenals hate you for it.

What did this horrible induced thing to daughter? Steroids metabolic will cause the same unknown causes. its so delicate in the human body wile they corrupt it.

Please look in to myasthenia gravis ♡

That's exactly why I gave up on it 10 years ago and I just treated symptoms as I was able to with my pcp. Now I'm legally blind and hard of hearing- they screwed a magnet to my skull and put a sound processor on the outside so I can hear. Bone anchored hearing aid. Now I'm finally being told that I have Lupus. I didn't have to be this far down.

Can you Elaborate a little on what your symtems are? Have you over 5 years ago like around six years 7 years taken any Medications more than once . Medications like Metabolic man made hormones? Prednisone can cause these symtems and stick with a person for years . any other stronger steroids like Triamcinolone Cream for the skin can make it to your blood stream causing immune Adrenal problems such as induced Cushings like syndrome and Cortisol level's causing Fibromyalgia like symtems anxiety Depression , morning waking Deprssion shakingness brain fog Confusion . also sensitivity to practically every thing including Skin - morning dressing feeling uncomfortable clothing on the skin. all this is torture and not readable on any level in medical instruments only till its to late . like Dexamethisone a strong steroid i was injected once for swelling from a product. Steroid adrenal shutdown is the worse feeling any one could have. Steroid phsychoses 2 years . my doctor suggested that i was induced with autoimmune Cushings like syndrome from taking 1 injection 5 years ago. i still go through the feeling you might be going through but worse from taking dexamethisone. that was only to be used on a dying cancer patient. Doctor who injected me the nurse was worried about doing the injection and now i know why. Doctor gets 4000 dollars injection and i get life of torure vertigo depreshion Fibromyalgia brain Damage for 5 years on going with little recovery if at all. So sorry and know what your going through. May be you never took any thing medically but the stuuf in our food water counter top meds have these man made hormones in them even tiny amounts can cause many to suffer. like we don't think about what leaded gasoline Causing millions of deaths and caused madness in Man commiting crimes they never would have thought of even Murder. If thier is a God he's Cruel to keep us like this with a book that tells you to believe all this and it will save us. well its true but gives us no benifit of the dougt. Sorry rambling but true.

No doctor is going to care enough to read a patient’s journal. They only care about 💵

@@Paarthurnaxdova That depends on a lot of things, for example how the economics of healthcare works in the country you live in. In Sweden, where I live, healthcare is next to free of charge for everyone, and the working environment is a bigger issue - doctors have a lot of patients, and sadly don't have a lot of time to spend on each of them.

No doctor has time to listen to your 100 symptoms and backstory on all those symptoms. They likely have multiple other patients that same day and you don't deserve more time then them or vice versa. I hate when patients complain about doctors like they are somehow more important or special then every other patient that day and deserve more time. So annoying and entitled. These are the same patients who complain when the doctor is running late, yet wants to complain about every symptom for over an hour at their 15 minute visit. After a very long day of listening to everyone's problems, what doctor is going to want to read your 5 year journal history of symptoms. Seems selfish to expect anyone to do that. Doctor's aren't robots who don't need sleep, free time, and self care. Dealing with 30 of you in one day would burn them out extremely quickly and then no one is better served when the doctor is burnt out. With mounds of medical school debt we can't just see 5 patients a day and give them all 2 hours to go over everything. Doesn't work that way.Get real.

I've never related more to any comment about the experience I have had as well. If one more doctor says I am just a "complex case" I will scream. I see a rheumatologist today for the first time and I'm not sure if I should be hopeful or skeptical 😭😅 How are you doing now??? Did you come to any definitive answers yet??

I am starting to think that I may have Seronenegative arthritis as well because my blood work comes back. Normal rheumatoid factor is negative, but yet I feel like absolute crap and have a ton of symptoms.

Did you get any treatment? I am in the same boat😞

@tanyaluchko9003 I have been seeing Rheumatologists since I was 25, I am 49 now and they just give me Brufen and Plaquinel

@@jacintawilley2849 did plaquinel help you? I was just prescribed it and scared to death to take it. Started with sulpha but had to stop because of side effects. Living in pain every day ☹️

@tanyaluchko9003 Plaquenil helped for a while but then my eyes started having issues and so I had to stop. Brufen deals with my pain but only mildly

Black is more of an area with all the induced suffering and suicides caused from steroids of Prednisone lesser but Triamcinolone and the 5 years of torture grave like Dexamethisone did me in very badly. they blamed the torture it does from my Smoking witch is very hard to stop and my doctor said its not smoking that caused Dex to cause this. Population depletions' are working but the most cruel torturing way to achive it is down right EVIL and should be destroyed by a carring God and not the seemingly opposet of love christians think they have today . Christians are suffering idiots unfortunately don't want the truth to be true. Torture gets away with it as if we deserve it just for being Human beings or maybe Animals. My doctor diagnosed me with steroid induced cushings syndrome autoimmune like symtems and has no clue how to treat it. adderal modofinil provigil only use to bring better feelings up but now that does not work much at all. They know what they started and set it well to hide any proof against them. Doctor from Boston mass said it is Steroid Adrenal shut down is Murder. Strange to hear him say that but makes one think . Confusing to no point

his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..

his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..

This might sound crazy but i and many do this. IODINE taking a few drops on any thing placing it on your teeth gums and spitting it out. it helps clear any internal infections but depending how much i do not know. Look up people using iodine on you tube. i have been taking it for 2 years keeping infection down all most gone . did not want to go to dentist torturing my mouth so i got rid of tooth abscess all most completly Gone with no pain. i could be suffering from infection poisoning of the gums' but INEXPENCIVE IODINE Keeps it away. I also have a Retainer and put the iodine in it supressing my mouth.

Yea I have a 1:640 Ana which is rare on a man, at least 8 out of 11 criteria for lupus, many symptoms that come as flares, Malar rash that expanded to my forehead, sun rashes, etc for decades but still no diagnosis. Doctors nowadays won’t follow the criteria they follow blood work only. So if you don’t get the specific sm or dsdna antibodies for lupus you won’t get diagnosed at least not in this country. Maybe go to a foreign country and try a rheumatologist over there and you might get a different answer. Doctors in the US don’t take any chances on a wrong diagnosis because they can get sued so they will wait until they have solid proof or you’re in the er. lol

his herbal medication is 100% Cure for Shingles virus and any disease virus and STDs I was cured after 12days of using the herbal medicine I ordered from Dr.Ani John contact him now and get your permanent cure..

The Cleveland clinic sucks. They only care about money. You are a number to them.

I also get “sometimes these things happen” and no initiative to find out why.

I’m so sorry to hear about this. It is very frustrating. The tools we use to make a diagnosis are limited and the medications at our disposal are imperfect. Although we all want to be able to make a diagnosis and name something before trying to find the treatment, when a diagnosis is elusive, it may be worthwhile talking with your doctor(s) about starting something for your symptoms. Treating the symptoms (for example - burning feet may indicate a neuropathic problem (nerve issue) and may be helped with medications specific for that) doesn’t mean you are “giving up” on finding an underlying cause, but can help a person feel more comfortable as they continue to investigate. Hang in there!

Every medical environment has pros/cons. Smaller private practice offices tend to have less bureaucracy, but larger university medical centers have easier access to specialists. Glad you found a system that works for you!

And all the money they made would make one pretty pissed.

I'm still trying to get a diagnosis. I just want you to know that I was on methotrexate for RA for about six years. About two years ago I started getting short of breath when exerting myself. I had COVID so I thought I had COVID Lung. I also don't exercise, former smoker, overweight, don't eat properly, and thought emphysema, cancer, or anything else. Finally I saw a Dr. I had been diagnosed with Pulmonary Fibrosis. My blood revealed that I was at a TOXIC LEVEL of methotrexate. Causing IDIOPATHIC NON-SPECIFIC INTERSTITIAL PULMONARY DISEASE. AKA Idiopathic NSIP. I'm now on oxygen all time and have a good friend living with me as I need help. I'm now on a transplant list for some "Slightly Used" lungs. Sorry...needed some humor. (That keeps me going) I'm only 55 years old and I was given a terminal illness that is Life Limiting. I used to be a NURSE. It sucks KNOWING what will happen to me until my VERY LAST BREATH. The only thing that keeps me from getting nuts, is that I'm able to plan my funeral and that burden will be off my family's mind. I'm sorry to talk up a storm and venting my feelings. Hope you ALL have found your peace. I have and I'm OK with it.

​@@kathrynmalekoff💛🙏🫁

Absolutely

That is the answer 100%

Ellaborate please on what is so fantastical

There is still so much work needed to better understand Sjogren’s and I’m sending you lots of compassion. The short answer is, yes, the sicca symptoms (dry mouth, dry eyes) may be mild yet you could still have other symptoms. If there is any question regarding the diagnosis (if you doctor remains skeptical that Sjogren’s is driving the majority of your symptoms) you may need a lip biopsy to confirm that, yes, Sjogren’s is the driver. The reason it is important, is that fibromyalgia can be seen with a low anti-SSA antibody. It can get very muddled. Should treatment be focused on Sjgoren’s or Fibromyalgia? In my practice, it takes some time and diligence and the patient will usually end up on a little bit of treatment for both to get the best result. Hang in there and good luck!

Oh my! So sorry to hear this! As horrible as your symptoms feel, they don't necessarily point to any one condition. It definitely sounds like you deserve an evaluation by a rheumatologist, if you haven't already had one. When someone has symptoms that are difficult to pin down, we often will need to do a lot of tests, (labs, xrays, CTscans, etc) to try to find something. Depending on what your labs have shown, other specialists that may be helpful to you is an allergist (to evaluate your hives/itchiness) or neurologist (because of your headaches and weakness). Don't forget that even if someone doesn't have a firm diagnosis yet, there are medicines that can be used to help with the symptoms while a person has all their testing and consults done. You can talk to your primary care doctor about your most distressing symptom if there is anything available to help with it while you try to get answers. Hope this helps and good luck!

You need an MRI of your brain and spine. I have multiple Sclerosis and it's possible that that you could. It could effect blood work but MS can't be tested with blood work. You need a MRI of your brain and spine with and without contrast dye. Start searching for a good neurologist, maybe an MS specialist, now and get in with your primary doctor and ask for a referral to the MS neurologist. Don't let this go. Even if you don't have MS you very well could have MS or something else neurological. If you are dealing with any vision issues find a good opthalmologist in your area. They can see your optic nerves when they dialate your eyes. Vision issues are extremely common with MS and an opthalmologist should be able to visibly see damage your optic nerves. Don't let them tell you that you have fibromyalgia. Fibromyalgia is not a diagnosis it's a symptom of neurological diseases.

@@nicolesaylor4027 that's exactly what the rheumatologist i seen diagnosed me with was fibromyalgia... im having such a hard time accepting that... I am in so much pain all over my body and weak and get migraines that last 2 days and im throwing up the 2 days... i also get shortness of breath and I get out of breath easily when im trying to do things... I just don't feel right or like myself at all.... I get numbness tingling pins and needles... idk if fibromyalgia would cause all the things that's going on with me

@@nicolesaylor4027 I also get cracking noises all over my body when I move or walk like my joints cracking and she's telling me that's okay... I never had that unil all the other things and pain all over body happened

@@nicolesaylor4027 even if I don't have ms im still scared that I may have some other type of autoimmune disease

My goodness! Well - yes having Hashimoto's, Celiac certainly puts you at risk for having another autoimmune condition, such as lupus. It is possible that a lupus patient could have a negative ANA when not in a flare, but this usually happens when the lupus flare as been controlled with medication specific for lupus, not usually on its own. There is very little data regarding fasenra and what it may or may not do to an ANA result. So in cases like this, the doc must rely on your symptoms and all your other labs (like your anemia and all the other antibodies) and it ultimately falls on the doc's best clinical judgement. A good question to ask, "Assuming I have lupus, what treatment do you recommend and what are the possible pros/cons of that treatment?" In Rheumatology, we sometimes have to move forward without all the information we 'd like, but we do it in an effort to get someone feeling better. Being mindful of not taking on too much risk, of course. Hang in there and hope this helps!

Sounds similar to me. My rheumatologist diagnosed me with connective tissue disease. He said I didn't check all of the boxes for RA although I'm being treated like I have RA. Diclofenac and Hydroxychloroquine.

I also have white lesions on my brain. Attacks the blood vessels and nerves in my body. Im suffering. I also get these small crusty sores on my arms and legs. My head feels like someone is raking all on the top of my head. Very painful. Its 24/7 of it.

that's because it won't lol. also it's very bad for your colon

That's probably your device, not Dr. Ortiz.

Turn down the sound and put captioning on.