Kris4444

Hi Raisin, Yes I can wear the cooling vest when I ride. They even have ones in white to wear when I show. It just amazes me how quickly it comes on. My mind was telling my body what to do but my muscles were unable to do what they were told. That was the scariest part. This has happened before. I used to ride a bunch of horses a day in hot and cold weather. I could understand if I had been riding outside with the sun blazing down on me but we were in an indoor arena, there was a nice breeze and I rode for a little over an hour... I had the thermoregulatory sweat test at Mayo too but I'm the opposite, I sweat profusely. Yesterday I had soaked through my clothes. Mayo's suggestions for me was to use clonidine and exercise/ride in a wet shirt. The clonidine had side effects that I didn't care for so I stopped it and the cooling vest serves the purpose of the wet shirt.

I see you have a HyperPOTS diagnosis too.....I don't understand how this can't be controlled somehow. I used to work outside ALL day in the heat and cold. Now I can't ride my horse for an hour without feeling like I'm literally going to die. Yet I can run on my elliptical in my nice cool basement for 7 miles and feel fine. I don't understand and I refuse to give up on my goals. Someone has to know something about how to fix this or at least make it tolerable.

Hi, I have had great improvement in many of my issues after starting Humira. One issue that has not gone away is the way my body is unable to thermoregulate. Not only with heat but cold and back and forth. Yesterday we had our first hot day here. I had a lesson with my trainer on my horse. I have been riding 3x's a week for the past 3 months and plan to go to shows for the first time in 6 years. Riding and training horses had been my life, my career until this illness began. It is still my passion. Things were going great in the cool weather but yesterday it got really bad. I've been having problems in the beginning of my rides with my breathing. This does seem to get better as the ride goes on but yesterday in the heat it never got better. I could not catch my breath and had to keep stopping. My trainer was very patient with me. My mouth turned to paste and my lips literally turned white with sticky yuck. I overheated yet I was covered in goosebumps and had the chills. I was extremly light headed and felt very foggy and far away. When I got down my flushing took over and I got a terrible headache. I felt drowsy, almost drunk and was afraid to drive home. My muscles were not cooperating with what I was asking while riding and after riding they were extremely tired and sore. I do have a cooling vest that I wear in the summer months and I do think that it helps. I didn't wear it yesterday because I wanted to see what would happen now that I'm off of so much of the medication. I was really hoping that it had improved but it obviously hasn't. Yesterday I felt like I was having an emergency. What can I do to keep this from happening and still be able to enjoy the sport I love? Any suggestions would be great. I realize how self centered I sound being that some of you aren't able to get out of be let alone ride a horse. Please forgive me. -Kris

Hi, Elizabeth I feel terrible for you! I hope things get better soon. I have a new WONDERFUL development. I started Humira and it has changed my life. I have lost 20 pounds in 8 weeks. My flushing has been reduced to almost nothing. I still flush with exercise but it goes away much faster. I feel soooo much better! My rheumotalogist started me on it because he feels that I have a systemic inflammatory disease of unknown name and origin but of the autoimmune type. He was able to find inflammatory arthritic changes in the joints of my hands. That is how I was able to try the Humira. I love that man! He has NEVER given up on me and has finally found treatment that is working! We don't know exactly why it is working, why I suddenly am able to shed the extra pounds but we are thrilled and plan to continue using Humira.

Super bowl Sunday. Had a mojito and flushed like crazy. I give up.

Thanks Chaos Lol Rosey they did a work-up for carcinoid and pheo and ruled them out.

My very non-committal diagnosis from Mayo is a "hyperadrenergic state" They put me on clonidine which did help. I have many other health issues though and after a year of being on it decided to get off of it. I have worked throughout but it has been very difficult. I did take a 30 day medical leave but came back full time.

Hi All, It's been a long time. I just wanted to tell you about a discovery I made. I have issues with flushing. I have been to Mayo, MN for ANS testing and all they really found was high NE. Long story short, I've been on Plaquinel for a very long time for my autoimmune issues. I have a severe flushing reaction when I drink alcohol (yes I've been tested for Pheo). A few weeks ago we had an office party directly after work. I did not take my p.m. meds. We were enjoying some cocktails. I DID NOT FLUSH! After putting two & two together I realized that the combo of the Plaquinel with the alcohol may be the problem so I tested my theory and stopped taking my p.m. dose of Plaquinel. Sure enough I could have a glass of wine or a beer or two with NO flushing. I informed my doctor who was a bit surprised. I have decided to go off of it altogether to see if it helps with the flushing that occurs with exercise. This may not answer all of my questions but it's another piece of the puzzle. Hope this enlightens someone else as well. -Kris

I have fibro too. Was diagnosed with it when I was about 19 after not recovering from being rear ended in a car accident. Same areas of pain.

Sorry for the misspelling of the condition.

Elizabeth, I've been reading about erythermalgia and it really seems to fit. I hope you don't mind if I ask you a few questions? I wonder if any of the following happen to you: Severe attacks after coming in from the cold- I get extremely red all over and very warm. Sometimes I can't stay awake. If I take a warm shower, when I get out I feel like I'm being attacked by fire ants. Headache after warm shower or bath. Problems with my ears. I can constantly hear myself talk, breathe, chew. I was told I have patulous eustachian tubes. Alcohol brings on attacks but mostly to my face and chest. My temp seems to fluctuate to extremes. There is no happy medium. Once I start to warm I overheat. Livedo reticularis Raynaud's Flushing with exercise. Vertigo when I stop exercise and extreme sweating that goes on for hours. I did test positive for cryoglobulins at Johns Hopkins but when tested again at Mayo it was negative. Although I get very red, I don't experience the pain they speak about with erythermalgia. Do you have pain? Thanks for any answers you may provide. -Kris

Katy, Oddly I can't really complain about much pain right now in my joints (knock on wood). It will be interesting to see if that is because I have grown used to the pain. My biggest disability at this time is that my stomach and colon are not working and I'm in constant pain from that. I have been weaning off my meds just to take a break. The one thing I've noticed is that the clonidine (which was prescribed by Mayo) really made a huge improvement with my flushing, sweating and vertigo. I am down to a half a pill in the evening and have noticed a definite increase in my flushing and I am back to sweating profusely after showering and eating. If this continues I will go bank on it. Chaos, Great news about your son! Rock climbing huh? Lol, out kids like to keep us worrying.

Elizabeth, I have always found that my symptoms are nearly identical to yours. I have had doctors suggest erythermalgia but none have offered treatment. What did your doctor prescribe or recommended? I am weaning off the clonidine that Mayo put me on for flushing. I DO feel that it was helping and may end up going back on it but I'm trying to reduce and/or eliminate as many drugs as possible however, I will soon be starting Humira in an effort ti see if it helps with the systemic inflammation I am experiencing. I'm going to look into your diagnosis as it is very interesting to me. Thanks for sharing! Kris

Hi Katie, I'm so sorry to hear that they have taken this drug away from you. Was it helping? What differences did you notice with the mast cell issues? Do you think that Humira may help me with that part of it too? That is what we are hoping for, that it will start taking care of ALL the inflammation as I seem to have it everywhere with no logical explanation as to why. I can be fine one day and a mess the next. Some of the inflammation I didn't even know about, like the bladder stuff. I went to the doctor because I was leaking urine when I rode. They did a test with a camera and he told me that I was having frequent bladder infections due to the amount of old scarring he was seeing. He showed me the darkend areas on my bladder that were signs of previous inflammation. Weird thing is I never had the "normal" signs of infection, burning while urinated, having to go frequently....thyroid too, no big warning signs yet when they did an ultrasound they found 7 nodules. I asked them why and they said inflammation, story of my life. Hi Chaos, I'm sorry about your son. It is great to hear that he is doing well on Humira. Have you noticed any side effects? Thank you for resonding. I can never get over the fact that every time I thow a "help me" out there you guys always repsond! -Kris

Thank you Rama. I wonder how many people with EDS and ANS issues have inflammatory forms of arthritis. Seems like once your body goes haywire you get everything under the sun.

Hi, My rheumatologist noticed the swelling in my hands which I had attributed to leaky capillaries and said he wanted to do an ultrasound to see if there is any joint inflammation. His reason being that he feels that I have systemic inflammation and that a biologic drug, like Humira, may be just what I need for all the inflammatory issues that I have such as: Microscopic Colitis Colonic inertia Thyroid nodules Bladder Inflammation Kidney Inflammation UCTD The list goes on and on. In order for him to get permission for me to try a drug like Humira, you'd have to have rheumatoid arthritis. My ultrasound did show inflammation, fluid around the joints and some beginnings of joint erosion. So the good news is I should pass the test for insurance and get to try the drug. I am hesitant though because of all of the side effects. I wonder if anyone out there has my type of issues and has tried a biologic? Thanks, Kris

I have episodes of both overheating and over cooling. I'm sure that my thermostat is broken. Part of the ANS issues that we deal with I think. I still can't get mine under control. When I get too cold and come inside I then get too warm, turn BRIGHT RED and sometimes even fall asleep due to the quick raise in body temp. The next day I will be covered in hives. Still, I'd rather stay on the cool side then get too warm.

I was wondering what tests made them diagnose you with MCAD? I have been to Mayo for my flushing and had been working with an immunologist as well. Recently I decided I needed a break from my meds and I am weaning off. I am starting to get some major issues back, flushing and vertigo with exercise and mini (what I can only describe as panic attacks??) attacks that make me feel like you would when you just fall asleep and then jerk awake, only I'm at work.... Anyway, I do have very high NE levels but my immuno says that I don't have any mast cell issues. She had me on Xyzal 2x a day as well as Singular, Vitamin D, B12 and I was taking Valtrex for chronic EBV. My only positive tests were for high NE and I always test high for MCH and MCV. Thanks. Elizabeth you poor dear! I haven't been on in a while. So sorry to hear you are still suffering! -Kris

I went to Mayo MN last January for ANS testing but saw Dr. Bennaroch who is a neurologist. I was diagnosed with a hyperadrenergic state due to high levels of NE. Everything else was normal. I was very impressed with Mayo and his much testing they were able to do while I was there. I am currently weaning off the clonidine that they started me in as I want to see what's going on with my body off meds but my symptoms are worsening so... Good luck in your visit!

Thanks Carrie. My sodium was 132. MCV 100.1 and MCH 33.1 None of them are crazy high or low but I've never had these values before or this pain. They said I was dehydrated which was why my bp was low so they gave me IV fluids.

They mentioned possibly doing a CT scan if the u/s showed nothing but wanted permission from mg GI doc who said no.

Hi Katy! I was just thinking about you. Hope you are well. E mail me please when you get a chance. None of my doctors other than my EDS doc believe I have mast cell issues. They won't do any further testing. This pain is weird. It's completely left sided and under my ribs, spreads to my back. Gets much worse standing or eating. ??

Hi, Yes I had been tested for celiac and was negative. I think this has something to do with being off the prevacid for over a month. The prevacid gave a false positive chromogranin A result so I had to get off and needed to retest. I think that is what is causing the pain. The low Vitamin B doesn't make sense because my immunologist has me take it daily. Maybe the daily diarrhea has me depleated? Strange for me to have low bp too (I know that's a given for most of you POTsies) but I'm hyper-pots and tend to run high so that sent up red flags for me. When I told the doctor this he poo-pooed me and gave me fluids saying it was probably just dehydration. I drink more water than anyone I know and even the nurse who collected my urine commented on how well hydrated I was. I hate going to the ER. They just don't get us...

Hi All, I've had really bad GI pain for a week. It has been unrelenting. I finally went to the ER where they did an ultrasound (even though I told them it was bowel pain) which was normal. My bp was low for me 101/53. I have high blood pressure but it's controlled with meds. I've never known it to be this low. At least my lightheadedness made sense. Anyway, they gave me fluids, a prescription for ativan and sent me on my way. When I got home I logged at my labs. They showed my sodium as being low and my mcv and mch being high. No mention of this was made to me and none of these values were skyrocketing ones. But I'm being tested currently for a neuroendocrine tumor and have me wondering. Does anyone know what these values may mean? Thanks, Kris

This summer has been horrible for me. The slightest exposure to the sun and I get the butterfly rash on my face and my extremities swell, lower legs get a red spotted rash. The next day I'm exhausted and have major joint pain. My rhematologist says it's not from my meds (even though hydrochlorothiazide says to avoid sun) and that he thinks it's my autoimmune disease. I have had very low positive ANA nucleolar pattern twice now. Life is starting to really ****. I can't even enjoy the outdoors. Any suggestions?