songcanary

Before I fired my PCP, I tried in anguish to explain to him that I can rally pretty well, but when it's over I feel just terrible with nausea and lightheadedness that lasted for days. Of course, that was before I totally crashed and couldn't even muster a rally. So I totally agree with the above comments.

Wow Dizzy, that's great news. I agree that this site has wonderful MCAS info. Bless those members for all the research. I just happen to be on doxepin for fibro but I also think it's treating a suspected case of MCAS. I hope you continue to feel better! Marsha

I have the same problem. I am diagnosed with fibro which accounts for the stiffness, but I also have chronic writer's cramp. I lost a good job because of it. I actually taught myself to write with the opposite hand to give the other one a break. It helps but I still have trouble with fine motor skills. Yoga eases the stiffness, but the severity comes and goes. A good physical therapist once told me that we are all certain body types and I am compacted. So it's harder for us to get a really good stretch, but we should do it routinely because it does help. I know how you feel. I am looking at my dog right now wishing I could relax and sprawl out as well as she does LOL.

When I went through stress similar to yours, my body just needed complete rest. And I mean complete rest. I wanted to go out, but physically it just wasn't possible because I was so weak and it would have made me worse. We are all so different, I had to learn how to read my symptoms and intervene before I crashed. It really helped a lot, now I can do that and I am able to live normally for the first time in two years. I hope you feel better soon!

My resting heart rate was 85 until last month, now it is in the 70s. It took me two years of 3x a week yoga to get it there. Plus walking three miles several times a week. Even when my HR was higher, my doctor never was never concerned because as Kalamazoo said, it was under 100.

Everybody's advice is so good. The only thing I can add is that the nurses now use pediatric catheters on me. That has been working well so far and now it's in my chart.

Lyn, Years ago when I drank wine I had unrelenting chronic UTIs. It was just trial and error that I figured out it was the sulfites. But then I got hives from the drugs to treat the UTIs. More trial and error to detect the sulfa allergy. Now I don't touch either one!

This is a good read. I have spent the last two years trying to address my sympathetic overdrive. When I look back on my life, it is a miracle I didn't crash long ago. It reminds me of my initial appt with my wonderful rheumy. He diagnosed me in five minutes and then spent the next two hours explaining why. It took me three years to find him, but I am so very grateful for that man. Thanks for posting.

Relax88, I mirror your exact symptoms and comments. And everyone else's to boot!

Gets my fur up too, Bren. I was so physically weak that I could barely stay upright. I had been working out but it made me much worse. I am sure I had an adrenal component but do doctors look at that? Grrr.

I started with blurry vision and lightheadedness too, although they came on gradually. I tried to push through it for a year and got worse. What finally helped was complete rest. I know you don't want to hear that LOL. But after about a year I was able to resume light activity very gradually. It has been a major lifestyle change for me, but I am feeling so much better. Wishing you a healthy journey!

Absolutely fascinating. Thank you! Will give this to my allergist and get his thoughts. And also my fibro specialist.

What a tremendous relief this must be. Very happy for you! Well over a decade ago I realized I had a sulphite allergy and it's been downhill ever since LOL.

I've had two and they were both no big deal. They used fentanyl and Versed thru an IV. I did have a bad reaction -nausea- to the citrate of magnesium prep, so I won't take that one again! But otherwise it was uneventful. I hope all goes well for you.

Any time the body can completely relax, it is beneficial. I'm really glad this helped you, Puppy. I have a friend who practices Reiki on animals and she says it helps them. I hope your next session is good, too!

I am so very happy for you!

My serum sodium levels have always been high but I was diagnosed with low blood volume at CC. However, it is a presumed dx because I am allergic to iodine so the nuclear medicine test was not done. My doctor based the dx on all my other symptoms and test results.

Before I got diagnosed I had those exact same symptoms. It was scary to say the very least. I had four ER visits; they thought I was mental. Once I got on meds and salt/fluids, I slowly got over those episodes. I was diagnosed at CC, too. It took me two years from diagnosis to start feeling like I might pull out of this. But I must emphasize that the progress has been very slow; it's been a two steps forward/one step back process. I do not have elevated tryptase but I suspect I have mast cell also. Fortunately I take doxepin for fibromyalgia, so I'm essentially treating mast cell at the same time.

Thanks for this link! I have never been able to find anything that didn't contain some crap that I was allergic to. This looks great.

I take a hypo allergenic multivitamin/mineral, vitamin D 1000, magnesium 200 and a probiotic every day. I don't megadose anything; I found out the hard way that it messes me up big time! When I first got sick I wasn't taking any of these things. It seems to be a good combo for me.

Hi Sheila and welcome. I remember when I was new and I didn't have much hope. But that all changed after getting such good and helpful suggestions from this group. You will make many friends here and get great support. I have fibro too. I also had terrible nausea until I started doxepin. Take care.

Kim, that is wonderful that you were able to have such a fun time. Parasailing--I cannot imagine!!

Thanks! Fortunately I am a scratch cook thanks to being raised by my grandmother. This testing revealed that I am reactive to oats, which is a bummer. However, it is a relatively low reaction so I can probably have occasional GF oats. So breakfast is the new challenge, cause I love breakfast! I'll just have to do more rotation. Thanks for the names of the other labs; it would be nice to have some insurance coverage for this kind of testing. Dizzy, I am really glad that going GF has helped you so much. It is shocking how food reactions can affect the entire body. I will probably notice more things as time goes by.

Don't let anyone tell you fibro isn't real. My fibro doctor is a specialist in fibro, and he even has it himself. His treatment for me has been very helpful. He has an excellent book 'Fibromyalgia: Up Close and Personal' by Mark Pellegrino MD. Maybe a library would have it, it is a 2005 printing. But he has an entire chapter on autonomic dysfunction and he REALLY knows his stuff. The book is huge. You can also get it on Amazon.

You may also have an intolerance to the shrimp itself, separate from the histamine issue. It's always something...