Nash Posted June 27, 2018 Report Share Posted June 27, 2018 Hi All, I need help in understanding my condition. Post repeated UTI in 2013 I developed chronic pelvic pain, on and off burning pain in legs, hands, severe fatigue, severe acid-reflux, hypertension (150/110 without beta blocker 50 mg and telmisartan 40), hypersomnia. Fatigue is worsening and after shower especially hot shower I feel horribly fatigued, dizzy, lot of breathlessness (which leads to anxiety) and I fall asleep most of the times after shower. I sweat profusely. My blood pressure falls by about 20 pts from supine to standing position with increase in heart rate by 25 pts (measured within 3-4 minutes). Same thing happens after mild physical activity. I also have chest and upper back pain mostly on left side. I have been to several doctors (Neuro, Cardio and Rheumatologist) but they are clueless. Medical system in my country is not advanced enough to do antibody testing (alpha, beta or muscarinic receptors) for POTS and CFS or understand POTS or other rare condition. I don't know the type of POTS I have (neuropathic, hyperadrenergic or other subset), CFS without POTS or only mast cell activation syndrome or it is something different. Anyone having similar symptoms especially issues after taking shower please do reply. Request you to please help as I am struggling due to debilitating condition. Regards, Nash Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted June 27, 2018 Report Share Posted June 27, 2018 As regards showers I make sure that there is someone around as my heartrate often goes over 180bpm in / after a shower. I have to lie down until it is under control, sometimes on the floor in the bathroom as I choose to lie down before I fall down. Shorter showers and making sure I have been horizontal before taking a shower helps. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted June 27, 2018 Report Share Posted June 27, 2018 Hi Nash, I can definitely relate. I have many of the same symptoms as you and it has been an extremely rough, uphill battle to try and make doctors understand... This forum has given me some hope in that sense. Many people have struggled to find a diagnosis and have gone through countless specialists just to find it, but there ARE doctors out there who are knowledgable and understanding. Until you find one, be comforted by the fact that you are not alone in all of this. Many people here, as well as your family and friends can surely lend a hand. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 27, 2018 Report Share Posted June 27, 2018 I remember my low point and I swore they weren't going to figure out what was wrong with me until my autopsy. That was 2 years ago. Since then they have found out what is wrong. And my life is better. That being said. Tachycardia in general can cause showers to be exhausting. I think we have all been there. Try a cooler shower or someone with you. I usually make my husband stay in the bathroom at least while I shower. Only shower in the evening. And I bought a Garmin HR to detect my heart rate (it is waterproof). I have learned the biggest trick to managing any long term health problem is to avoid triggers when you can, plenty of rest and water, and having someone to talk to about all of the crazy things your body is doing and how it makes you feel. I hope things get better for you. Good luck! Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 27, 2018 Report Share Posted June 27, 2018 @StayAtHomeMom - you had an autopsy 2 yeasrs ago????? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 27, 2018 Report Share Posted June 27, 2018 4 hours ago, Pistol said: @StayAtHomeMom - you had an autopsy 2 yeasrs ago????? Lol no. I felt like they weren't going to find out what was wrong until I had one. My low point was about 2 years ago when I felt that way. Maybe should have worded that different. 😂 Quote Link to comment Share on other sites More sharing options...
Scout Posted June 28, 2018 Report Share Posted June 28, 2018 Hi there Nash, Just wanted to let you know I relate so much. I have very similar issues to you, from the sounds of it. Showering can be so difficult when the heart is racing - so I often have a bath instead, just ensuring the water isn't too hot. If you don't have a bath, you should look into getting a shower chair. I find that being able to let your legs rest, just means the heart can slow down a little and doesn't have to work quite as hard. I'm so sorry that you've seen several specialists and haven't gotten anywhere. It's difficult having these scary symptoms, and not getting answers, but just know you're not alone, and our bodies are strong things. Is there a specialist in autonomic dysfunction anywhere in your region? I wish far more doctors knew about this condition. It would make our lives so much easier. Sending well wishes. I hope you get the help you deserve very soon! Quote Link to comment Share on other sites More sharing options...
Nash Posted June 28, 2018 Author Report Share Posted June 28, 2018 On 6/27/2018 at 8:13 PM, GasconAlex said: As regards showers I make sure that there is someone around as my heartrate often goes over 180bpm in / after a shower. I have to lie down until it is under control, sometimes on the floor in the bathroom as I choose to lie down before I fall down. Shorter showers and making sure I have been horizontal before taking a shower helps. Thanks Quote Link to comment Share on other sites More sharing options...
Nash Posted June 28, 2018 Author Report Share Posted June 28, 2018 13 hours ago, Scout said: Hi there Nash, Just wanted to let you know I relate so much. I have very similar issues to you, from the sounds of it. Showering can be so difficult when the heart is racing - so I often have a bath instead, just ensuring the water isn't too hot. If you don't have a bath, you should look into getting a shower chair. I find that being able to let your legs rest, just means the heart can slow down a little and doesn't have to work quite as hard. I'm so sorry that you've seen several specialists and haven't gotten anywhere. It's difficult having these scary symptoms, and not getting answers, but just know you're not alone, and our bodies are strong things. Is there a specialist in autonomic dysfunction anywhere in your region? I wish far more doctors knew about this condition. It would make our lives so much easier. Sending well wishes. I hope you get the help you deserve very soon! Thanks. Quote Link to comment Share on other sites More sharing options...
Nash Posted June 28, 2018 Author Report Share Posted June 28, 2018 23 hours ago, StayAtHomeMom said: I remember my low point and I swore they weren't going to figure out what was wrong with me until my autopsy. That was 2 years ago. Since then they have found out what is wrong. And my life is better. That being said. Tachycardia in general can cause showers to be exhausting. I think we have all been there. Try a cooler shower or someone with you. I usually make my husband stay in the bathroom at least while I shower. Only shower in the evening. And I bought a Garmin HR to detect my heart rate (it is waterproof). I have learned the biggest trick to managing any long term health problem is to avoid triggers when you can, plenty of rest and water, and having someone to talk to about all of the crazy things your body is doing and how it makes you feel. I hope things get better for you. Good luck! Thanks! Quote Link to comment Share on other sites More sharing options...
Nash Posted June 28, 2018 Author Report Share Posted June 28, 2018 On 6/27/2018 at 8:13 PM, GasconAlex said: As regards showers I make sure that there is someone around as my heartrate often goes over 180bpm in / after a shower. I have to lie down until it is under control, sometimes on the floor in the bathroom as I choose to lie down before I fall down. Shorter showers and making sure I have been horizontal before taking a shower helps. Thanks Quote Link to comment Share on other sites More sharing options...
Maggie Franken Posted June 29, 2018 Report Share Posted June 29, 2018 I wish I would have found this site earlier. The forum patients on this site sound like they have a condition, like I had, that comes from enlarged turbinates in the nose. Hard to understand yet changes the way the blood flows. Affects all organs.. This condition can be fixed easily as of January 2001 with sinus surgery. But these patients are tortured by medications that shouldn't be prescribed in the first place. Doctors know exactly what they're doing but they don't like my story so they're waiting until I'm gone to fix it. Quote Link to comment Share on other sites More sharing options...
Jenharts1 Posted June 30, 2018 Report Share Posted June 30, 2018 Nash, I can really relate to your struggle, it took me over 4 years and countless doctors and specialists before I was finally diagnosed correctly. Don't give up on trying to find a doctor that is able to help just keep going and don't give up. I myself went through phases of such utter frustration, exhaustion, and fatigue that I swore I'd never go to another doctor again, I'd give myself a few months of giving up on the medical community and just dealing with it then I'd pick myself up and try again not willing to live this way anymore. In the meantime start working on ways to cope with your symptoms. As far as the shower try taking them in the coolest part of the day, the heat really exacerbates my symptoms so when I'm feeling really bad I take a cold shower, get a chair for the shower it doesn't have to be an expensive medical grade shower chair I currently have a cheap plastic lawn chair in my shower and it works great, if you get weak or dizzy sit down for a bit. Have a fan turned on by the bed, as soon as you dry off go lay down in front of the fan to quickly cool down and allow your blood pressure and heart rate to regulate itself a bit before you try to do anything else. Most of all just know you are not alone there are thousands of us out there everyday struggling to get through our showers too. Judging by your post it seems that you've done a lot of your own research, print out the medical journals you feel most apply to you, highlight the passages that match your symptoms, write in the margins your vital signs and lab results that correspond and take them to the most compassionate doctor you can find and ask them to please go over them with you. Even if you can't find an expert a compassionate doctor who is willing to learn and even do a little research might help get you on the right path. Quote Link to comment Share on other sites More sharing options...
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