Avatar universal

I need your help please

I need your help guys! I feel like I am at wits end. My nights feel like I won't make it until morning. I need tips and advice on what has gotten you out of a horrible flare up. I have been in this cycle of misery since 4 weeks and 3 ER and 4 Dr. visits have not helped. It seems like I just can't break this cycle:

Symptoms Started 4 weeks ago:

Strange taste in my sinuses/ mouth.
Complete dryness in my sinuses, eyes, mouth, throat. Absence of any mucus. My whole body felt like a shriveled up prune. My hands look like I am 80 years old. I drink loads of water, highered salt intake, pee like crazy. Still feel dehydrated since weeks.

I get up to 4 panic attacks a day, every day since 4 weeks.

My eye sight changed to more blurry.

Burning pain episodes in my whole body. Swelling in my legs and hips. Burning pains in my kidneys.
Allergic reactions to meds and food. I am nauseous all the time. No appetite at all. Lost 14 lbs involuntarily.

Can't fall asleep and when I finally do, I either wake up having a panic attack, blood pressure problems or I feel like I am dry like a desert and need to down water.
When first waking up I have excruciating pain in my body like there is toxins running through my veins.
I get very dull headaches. Like they are inside my brain.
My heart is racing, I get heart palpitations, stinging pains and burning pains in my chest.
My body trembles and I get tremors. Excessive sweating. Excruciating burning pains. My stomach feels very hard at times.
My body feels like it's attacking itself. Arms and legs have tingling pain and numbness. Inflammation. Muscle pain and bad muscle twitches. Ongoing pain between my shoulder blades. My whole body crackles at times.

Serveral blood tests were done. Dr. say they are fairly normal, but they always showed the following:
White Blood cell count
ABS monocytes
AbS Neutrophil

Anion Gap

ANA are 1:320 homogenous

ER prescribed Lexapro and some other med to which I all had bad allergic reactions. Weed makes me more anxious. CBD doesn't seem  to help. I take Xanax when needed. I take 0.25mg each up to 4x a day, because I get up to 4 attacks daily and in my sleep. Started on Gabapentin.

I eat food and within half an hour I feel hot, flushed cheeks, I get nauseous and the worst dizzy spells and here I am again downing loads of water.
My Lymph nodes especially the ones under my arm pits are painful and feel swollen. Chest feels tight like something heavy is on it. That comes and goes. My hands and feet are freezing cold and clammy. Burning pains all over my body and uncontrolled muscle twitches.

Thyroid came back normal
No diabetes.
24hour heart monitor came back fine.
Lupus Dr said it's not Lupus.
MS Spinal tap is negative.

I have had similar attacks off and on about every 2 years since 2011. My next Dr. appointment is not until the 20th.
I tried Epsom salt bath, but the heat seems to make it worse. I am also diagnosed with Fibromyalgia, but this is NOT my typical Fibro.  I am desperate!! I want to feel better and don't know how. Any of you who can relate... what helps? What gives you relieve? Herbal? Medicine wise? I was thinking of going back to ER, but so far they keep sending me back home after giving me Lorazepam with the diagnoses of Panic attack and heart palpitations, or they blame it on my Fibro. This is the worst I have felt in my 47 years of existence. What are we overlooking? What else should they test for? Thank you for taking the time to read and give advice. I am sorry it is long ❤️
3 Responses
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20620809 tn?1504362969
This sounds challenging to figure out.  Glad you are working with doctors and I'd keep doing that.  In most cases, a positive ANA test indicates that your immune system has launched a misdirected attack on your own tissue — in other words, an autoimmune reaction. But some people have positive ANA tests even when they're healthy.  Keep that in mind.  That result may or may not mean anything. I think you've done all you really can to investigate. Your only option is to keep your appointment on the 20th (almost here) or to start at base level for another evaluation.  I'd not go to the emergency room any longer for this. This is a chronic care situation and they aren't going to be able to determine in the ER what is going on.

I'm glad you are prescribed lexapro and I'd take it waiting for help with anxiety.  Could, please don't get upset at this question, be an anxiety element to this?  Some people have physical symptoms to anxiety. Some people with health anxiety also feel everything and anything and are sure it is the worst case scenario. Not to minimize your symptoms or issues, I promise. But perhaps that is going on on top of this making it worse.  Either way, panic attacks and great anxiety because of an unknown illness will lead to excess anxiety and it is good to treat that. I think therapy along with is beneficial to learn coping skills.  

So, I agree it is an excellent question about fibromyalgia.  https://pubmed.ncbi.nlm.nih.gov/9207710/  That also can result in some of your symptoms and your lab results. "Fibromyalgia is a musculoskeletal disorder characterized by generalized myalgias, arthralgias widespread tender points in discreet areas on examination. It is frequently accompanied by fatigue, stiffness, and a nonrestorative sleep pattern. These patients generally have a normal blood count and chemistry profile."  From the article, sounds like it could be you.  A positive ANA fits as well.  Here is a whole article on it  https://www.medicalnewstoday.com/articles/147083  Truly when I read through that article.  It sounds like you.  Let me know what you think.
Helpful - 0
Thank you for taking the time to answer this so nicely and in detail. I appreciate it. I am not offended at all by your question. I do have no doubt that anxiety is a part of it, but for me it seems more like my body is in distress because something is off, than lets say a deep rooted issue somewhere in my sub conscience You know... . Yes the Fibromyalgia plays a role I would say and there is lots of nerve related pain involved in this "flare up" It just strikes me as odd as there are many symptoms that are not related to the fibro or the panic attacks, unless maybe my body is so stressed that it all malfunctions since everything is connected. Sjoergrens is definitely something to look into as of all this dryness but when go to the ER all bloodwork usually comes back ok with a few fluctuations here and there. I have dealt with this so many years now and the flare ups I get, can be very different from each other as well. The first one seemed like an MS attack, the second one I could have sworn was Lyme with all the symptoms. The third had all symptoms of Lupus and all organs involved. But with all symptoms some stay the same and that is the nerve damage, dryness and the muscle pains and panic attack like attacks and horrible insomnia. With every flare up I get worse, because I deal with other issues afterwards which do not go back to how they were before.
Avatar universal
Regarding your positive ANA, does Fibro cause a positive ANA? I read based on your titer and pattern - maybe Lupus? Have you reached out to your Rheumatologist?
Helpful - 0
Yes he has sent me to the Lupus specialist at Stanford and he determined that it is not Lupus.... even though... it sure feels like it sometimes
How did he make the determination? Have you looked into sjogrens? I’ve narrowed it down to either Sarcoidosis or Sjogrens for me. I have an appointment with a pulmonologist soon, so I’m hoping for some answers.
Avatar universal
I forgot to mention I also have lots of swelling off and on in my legs and I get horrible watery diarrhea after which I always have trembling in my body and tremors.
Helpful - 0
Did you get a Covid vaccine? If so, which one did you get?
No covid vaccine and I was tested at the hospital and am negative.
The only reason I asked is because I got the J&J on 4/9. Idk if it was the vaccine or the cold, but after the vaccine my lymph nodes swelled up - probably about 3 days after. Now, here on 5/13 - they are still swollen, but they are going down slowly.
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