Broken_Shell

Hi, I am sorry to hear that you have developed a new symptom. Losing the ability to sweat was one of the first symptoms I experienced after developing dysautonomia. I used to be involved in a dance group that performed outside in the summer heat. I would always sweat during these performances and at other appropriate times. My loss of sweating occurred abruptly rather than gradually, and I do not sweat at all in response to heat now. I am unable to tolerate being in the warmth or the sun, and I take ice packs and cool wash cloths with me when I go outside during the summer. While I have not recovered any of my ability to sweat in the last seven years, I know that our symptoms can vary from day to day and come and go for no rhyme or reason. Therefore, I hope that your loss of sweating will only be temporary. I don't know if it means that your dysautonomia has gotten worse or just changed. How long have you had this condition? Have you developed any other new symptoms since developing dysautonomia, or has your condition otherwise been relatively ?stable?? I wish you the best. ~ Broken_Shell

I am currently hunting for a hormone therapy to "shut down" my hormone fluctuations and periods... no success yet. I have had a lot of heavy bleeding and been very disappointed. I am glad to hear that the Nuvaring is working for you though, especially after trying many other options. The Nuvaring is on my list of possibilities. Just a note though that the Nuvaring is systemic hormone therapy. ~ Broken_Shell

Hi All, Me too... all the doctors I see look at my hands and feet and ask me if I have seem a rheumatogolist and if I have Raynauds. I have had several extensive rheumatological work-ups, and have been told that I do not have Raynauds per say because the vasoconstriction is not only triggered by cold temperatures. I believe that it is just inappropriate blood vessel constriction and dilation due to dysautonomia. It does look scary sometimes though and attracts a lot of attention! I also usually have the purple, splotchy livedo reticularis-like vascular pattern on my abdomen and legs, especially my knees are usually purple. ~ Broken_Shell

Hi, Add a "me too" in there! I have been getting myofascial work for over two years by a PT for chronic myofascial pain in my head, neck, face, etc. She does work my whole body though using a gentle technique known as Upledger and also does craniosacral work on me. These are the only types of therapy work that I can handle. You can find a therapist in your area by looking on www.upledger.com. During and after my treatment, I experience flushing, cold hands and feet, wooziness, etc. I think its a combination of the dysautonomia and my body's inappropriate response to having my tissues "unwound." I have the same sorts of responses as they are tightening up. The stimulation of autonomic nerves along the spine and base of the head seems like it may certainely be related though. The therapist isn't sure what it is, but I have seen so many PTs and she seems to work the best with my body and understand my full condition a little better than the others I seen in the past. Interesting that others are expereincing the same thing.... ~ Broken_Shell

Hi Mae, I am sorry for what you are struggling with. I am sure it is frustrating and discouraging. I have a few thoughts that I wanted to share. Have you ever been tested for Epstein-Barr, Herpes, or CMV antibodies? Those might help determine what type of virus you had. Regarding the vaginitis... are you able to use topical (intravaginal) antibiotics? I can't tolerate oral meds, but have used both intravaginal Metrogel (Metronidazole) and Clindese (clindamycin) without any problems. I hope that helps. Good luck! ~ Broken_Shell

Hi NorthernDarlene, I would encourage you to begin the process of applying for disability, as it is an involved process. You can initiate it online by going to www.ssa.gov. I don't know that there are specific requirements for qualifying beyond being disabled. I receive disability - I had to drop out of graduate school and am unable to work due to my dysatuonomia, hypoglycemia, and pain. I was concerned about having enough work experience because I had only worked part-time jobs as a student, but I was still approved because my medical records and care giver testimonial reflect that I am physically disabled by my symptoms and unable to work or attend school. However, I think that work history may influence how much monthly payment you are awarded. Best wishes... I am sorry that you have gotten to this point though. I don't know if I can be of any further assistance, but feel free to PM me if something I wrote wasn't clear. ~ Broken_Shell

I was worried about this as well because of the dysautonomia and my sensitivity to medications, but I have not had any problems with the dilating drops since developing this condition. Good luck... hope it goes 20/20

Hi Worried Mom, Welcome aboard! I am sorry for what your son is going through - and I imagine it is heart breaking for you as well. I echo what the others said. Autonomic Dysfunction is a complicated and often misunderstood condition, so don't be happy with one medical opinion if it doesn't feel right and you are not getting the answers you need. I hope that you will find a lot of direction and support here on the forum. To offer you some optimistic advice, the individuals who often recover from dysautonomia are usually those that suddenly develop the condition in their teens. You may want to read up on this topic. I believe that there are papers by Dr. Grubb that address this topic. Best wishes. Please let your son know he has our prayers and support. ~ Broken_Shell

Such good news Suzy! Thank you for sharing your joy and giving us hope. I pray that your improvement continues. ~ Broken_Shell

Great news! God always listens and He will show us the way if we are patient and trusting, as hard as that might be sometimes! Good luck with your appointment. Let us know what you find out. ~ Broken_Shell

Hi, I hear you... sometimes I feel as though my dysautonomia diagnosis just gives all of my doctors a garbage can to throw every symptom and problem into without further investigation. I think that the key is in accepting "good enough" because we know that we can flare at any time and then "good enough" will look like perfect, but we must also never stop fighting for better, for "normal". Firewatcher, I know that you are a very educated person. Trust yourself and don't let the doctors blow you off. Here's my quick example.... I had a change in hormone therapy that has caused me to bleed heavily for over three weeks straight now. I've been to the doctor and ER several times and my hemoglobin has dropped from 14.1 to 10.5. I am very weak and can barely make it between the bathroom and couch without getting out of breath and feeling extremely light-headed. All the doctors keep saying these symptoms aren't from the bleeding because my hemoglobin hasn't dropped below 9. I don't need a blood transfusion, so it must be my other problems causing them. I couldn't believe it... I thought to myself, where is the common sense here? Well, yesterday I went to see yet another reproductive endocrine specialist who said to me, "Of course you are weak and can barely stand up... you've been bleeding heavily for nearly a month, you're blood counts are dropping from what yopur body is used to, and you are extremely iron deficient! How can the OB/GYN and ER doctors say that there must be another cause for these extreme symptoms that came on with excessive bleeding?" I wanted to hug the man, and I feel more comfortable following with him than the previous three doctors who just couldn't seem to fathom that prolonged heavy bleeding could make me even more weak and fatigued than usual. I just hope that in addition to being practical, he has a way to help me too. Anyways, I know what it's like to keep having the same things monitored over and over and feel like you never make any progress and your doctor's visits are more like "courtesy calls." One friend once asked me what my doctor's appointments are like because she was used to going the doctor for a problem, and then having it diagnosed and resolved. Just hang in there and don't let yourself give up on striving for better even if you feel like your doctors have. ~ Broken_Shell

Hi, I have a myofascial pain syndrome that mostly affects my neck, shoulders, face, and head. I know that many times dysautonomia and fibromyalgia exist together, but there are specific diagnostic criteria for fibromyalgia. If you can afford to see a pain specialist, they might be able to make the right diagnosis and offer you some treatment options like PT, medications, acupuncture, etc. Good luck! ~ Broken_Shell

Hi Steph, I am not up to typing much right now, but wanted to say welcome to the forum. I am sorry what you are going through that has bought you here, but I hope that you find a lot of advice and support. Looking forward to seeing your questions, experiences, and posts. ~ Broken_Shell

Hi Ricky, Many of us have a circadian pattern to our symptoms. Every morning is a nightmare for my body, and I feel the most normal between 9 to 11 pm. However, I don't feel sleepy, just more normal and like my body is in better control of itself. I don't know if anyone knows exactly why this happens, but here are a few quick thoughts (sorry, I'm having a really bad day, so I hope this makes sense...) - while we sleep our autonomic system is in control, so we wake up in the morning having our bodies been strictly run by a broken autonomic system for 8 hours - getting our bodies up in the morning requires a big autonomic orchestration from sleep to wakefulness and our bodies aren't able to properly manage this transition; we let out bursts of hormones and neurotransmitters like everyone else who wakes up, but ours aren't appropriately balanced and they set off a domino effect that takes hours to get under control - levels of cortisol and epinephrine/norepinephrine are naturally highest in the morning and decrease throughout the day - all night we are not taking in any fluids or salt - human bodies are made to function during the daytime hours, so everything is more reved up from metabolism to urine production; those of us with dysautonomia have an imbalance between what's reved up and what's calmed down and this inbalance is more exreme at the time of day when the body is usually reved up Hope that all makes sense. Thank you for reading my thoughts. I hope Michelle is feeling better soon. Just hang in there and keep fighting... we all are and we understand how hard it is! ~ Broken_Shell

Chrissy, I am sorry for what you are going through. Are you feeling lightheaded or having a racing heart as well? Have you tried a combination of midodrine and a beta-blocker when attempting to be upright for longer periods of time? I also have a very hard time being upright and I wish I had more ideas to offer. Hang in there! My prayers are with you If only we could go through the world laying down... ~ Broken_Shell

Hi, I have hypohydrosis, but I had a similar reaction following the thermoregulatory sweat test. I was so sick I could barely stand up and felt as though I could die at any moment. I had to spend the rest of the day in bed. When I told the neurologist this they said it was dehydration and I shouldn't worry about it and that I should drink Pedialyte. I was appaled that they didn't seem to understand how ill going through this test made me, and I couldn't believe how viciously my body reacted to it, but I can relate to what you experienced. Sometimes I think it's difficult for others (including doctors) to understand how extreme and out of proportion our bodies react to stressors because of the dysautonomia. Hang in there! ~ Broken_Shell

Hi, Those feelings are a normal part of being human. It's hard to see people making plans and enjoying their lives when we are living in a daily nightmare. The weather has gotten nicer here lately, and I feel sad to see people out taking walks and taking trips to the park, baseball game, etc. I am 27, and it's very painful for me to see my friends get married and have children - even though I am incredibly happy for them - just because I know that I will likely never have these things and I had looked forward to them (especially being a mom) my whole life. However, that being said... we are the blessed ones if you look at it another way. Those of us with this awful condition know how precious it is to be able to do simple things. We recognize the things in life that most people take for granted. Of course we would rather be normal and healthy, but because of our condition we need to be extra thankful for everything that we do have. ~ Broken_Shell

Hi Radha, I had a problem about a year ago with pain in just my left breast - it became nodular and enlarged. I had a mammogram and ultrasound and mri work-up that just showed fibrocystic changes in one area of the breast. It turned out to be from the hormone medication I was on and resolved when I changed the medication. Is the pain you have in your actual breast, or is it in your chest behind the breast? The best place to start investigating would probably be with your OB/GYN. Good luck! I hope you find some answers. ~ Broken_Shell

Hi Dani, I agree that bleeding sounds like an inflammatory bowel condition, so I am glad that you are set up for a colonoscopy. I have had a lot of autonomic bowel problems and autonomic symptoms (outside the GI system) related to GI activities. For years I had severe constipation and had to give myself large volume enemas several times a week, then in the past year I have had about 18 episodes of increased bowel frequency and nausea associated with a huge increase in my other autonomic symptoms. Good luck and let us know how things turn out. Not that you want to have Crohn's, but it would be great if one of your symptoms would be a more treatable condition and you could start to feel at least a little better! ~ Broken_Shell

I agree. I read all of this literature and books about how we should "recover" and return to a functional life, but I have gotten worse over the past 7 years since developing dysautonomia. It's too bad that all of these resources aren't right because all of us want more than anything to recover! If only our will power were enough! ~ Broken_Shell

Hi, I have not been able to work since 2005. I am 27 years old and was a graduate student when my symptoms progressed to the point of disability. I had to take a medical leave from school two years ago because I can no longer function well enough to complete the clinical work portion of my degree. I was studying for a PharmD degree and completed all of the didactic coursework, but could never manage the physical clinic setting. While still in the program, I did well academically and loved school, so I stuck in out through the classroom component hoping that I would get better by the time clinicals began. I even took exams laying on the floor and had to have a friend tape most of the lectures for me my last year because I was too sick to leave my apartment. I don't know that I will ever be able to do any work, especially outside the home. It's difficult because I was really looking forward to completely a residency and working in healthcare - instead, I have become healthcare! Take care and know that our survival with this condition everyday IS our work! ~ Broken_Shell

Hi, I think I may have mentioned this in another post. I have problems with daily headaches and have found some relief with craniosacral therapy. If anyone looks into it, I would just advise that you be careful who you see. I see a physical therapist who is also extensively trained in craniosacral work, but there are a lot of non-healthcare professionals who take a few courses and are then certified to practice craniosacral therapy. ~ Broken_Shell

Hello, I do something similar. I don't say that I am feeling better, but I muster up all of my energy and act like I am feeling much better than I am. I hate that I do this because I know that the doctors don't get a good idea of how unwell I feel and how disabled I am by my symptoms. It is something that I am trying to stop doing. I am the same way with my friends. I'll tell them that I don't feel well, but when I see them I try to hard to act so happy and cheerful that I am completely wiped out and crash after visiting for an hour. They only see the "show" and not the crash. I think that this is extra frustrating for us because many people already do not take seriously the extent of our symptoms. Let's all make a pact to be more honest with the doctors and show them what we really deal with everyday! ~ Broken_Shell

Hi Ana, Yes, this test checked for at least 30 different things. Mine was ordered by a neurologist and had a few abnormalities, but he said that they didn't fit a pattern for a known disease. I was disappointed, because like you, relative to the normal range I thought a few of my values might have meant something, but the doctor didn't really seem to make much of it. He was a knowledgable and experienced doctor too, so I don't think that was the issue. I hope you get some answers. Keep us posted if you find anything out. ~ Broken_Shell

Hi, Did you have this test done through a naturopath or traditional doctor? I had this test ordered my both, and neither said much about it. It sounded like there was only a concern if the values were either very low or very high. Hope that helps. I know it is frustrating, especially after you paid for the test! ~ Broken_Shell