Mrs r Posted January 23, 2019 Report Share Posted January 23, 2019 hey so I am having a really rough couple weeks months ….years.. at moment I have viral infection water infection my mast cells hate me and my pots me/cfs has joined the club my walking is impossible at moment I struggle get to doctor I have to use my wheelchair my husband or my mum takes me I have had three day course of antibiotic's they not helped so sent sample of to the lab they don't like give out lot antibiotics here in uk . she was worried about my immunity to I usually go hospital get iv saline for my pots when its to much try to got really awful doctor he wouldn't give me it !so I've had suffer even though I had a hospital letter of my cardiologist telling them I have serve dysautonomia so I went home been in my bed ever since I no that not help my pots ….I try keep my legs moving ive had tremors with stress and my legs really shake terrifies me .ive got wait till Monday to see a doctor at my local office she lovely so I rather suffer and wait ...guess am just looking for any advice feeling very low with it all . Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 23, 2019 Report Share Posted January 23, 2019 Please ask them to test your ADRENALS.....the shaking is usually associated with ADRENAL Issues....I have this symptom too....it is the worst symptom....I really hate when I get the shakes and tremors...... Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 24, 2019 Report Share Posted January 24, 2019 I am sorry you are feeling so unwell. I am sure it will get better. Are you getting enough electrolytes and salt? I have noticed people on here find out some of their vitamins and electrolytes are low. I would see if you can have them tested and maybe supplement. The smallest things can throw us out of whack. I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
Mrs r Posted January 24, 2019 Author Report Share Posted January 24, 2019 I have had all my vitamins tested my magnisum low i was on tablets but had lot belly probloms so paused for while . i have to take dioralyte once day for my electrolytes soduium colride potasuim in it that seems help with the fainting .my levels all my vitamins are always up down .tremors are so scary i got upset on top everything stressed my body out had shakes shivers tremors heartrate high was awful i was allready unwell chronically ovs then the viral then the water infection . Still on going got go bk wed for more bloods water sample and if still got sore belly poo sample to see if out going on with my bowel she said. thank u for all your kind replys 😊 Quote Link to comment Share on other sites More sharing options...
Potsie1990 Posted January 29, 2019 Report Share Posted January 29, 2019 I have tremors as well also. I tested and was found to have adrenergic issues. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted January 29, 2019 Report Share Posted January 29, 2019 29 minutes ago, Potsie1990 said: I have tremors as well also. I tested and was found to have adrenergic issues. What kind of test did they do? I did a 24 hour urine test/blood work and a CT scan on my adrenal glands. I don't know any of the results yet though. My hands tremble. Especially when I'm exposed to heat. Sometimes just for no reason. They actually have shaken my whole life it's just gotten worse. Or maybe that's marriage? Jk Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 29, 2019 Report Share Posted January 29, 2019 The shakes can be from elevated norepinephrine levels which can cause tremors, anxiety, tachycardia, hypertension, cold hands and feet, seizures …. this is hyperadrenergic POTS. The levels are checked in a blood test lying down and then being upright for 30 minutes. They say anything over 600 is elevated. Quote Link to comment Share on other sites More sharing options...
bunny Posted February 1, 2019 Report Share Posted February 1, 2019 @Pistol: Thanks for that info. I've had tremors over the years but have a family history of Parkinson's, so I always blamed it on that and figured I'd deal with it later. Now I have something possibly less sinister to blame it on. Quote Link to comment Share on other sites More sharing options...
Mrs r Posted February 1, 2019 Author Report Share Posted February 1, 2019 Thank u all for your kind replys once my doctors has sorted my stomach issues i will mention it .my cardiologist is also wanting to try me on mestion?but i have been putting it of for mast cell reasons and if am honest am genrally terrified to feel any worse at the moment i never agree to any thing they offered me so far ...belly issues still on going just waiting for results ...as if they going give me a answer .... Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 2, 2019 Report Share Posted February 2, 2019 Dear @Mrs r - you mention that you are not taking any of the meds they have offered you so far for fear of getting worse: in my experience we cannot find what helps if we do not take the medications that are recommended by the doctors. I too was always scared to try a new medication but had I not done that then I would not be controlled today. Yes - some meds were flops and I had to stop them but others were godsent and greatly improved my symptoms. Unfortunately it is trial-and-error since no one person responds the same to meds and most of us are very sensitive to medications. However - nothing changes if we do not MAKE changes. Be brave - and work with your doctors to find the treatment that is right for you. Quote Link to comment Share on other sites More sharing options...
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