New here... what do you think of my symptoms?
Posted , 2 users are following.
Hi there,
I recently read about Addisons after many years of struggle... I'm sure it's not my only issue but... here goes...
* Neuropathy / nerve pain in legs and feet. Rarely, in my hands
* Extremely low weight + fatigue
* Muscle wasting / tightness
* Dizziness when eating, especially high potassium foods (Potato, dried fruit, nut butter)
* Pains worsen after drinking water, urinating or not eating for longer periods
* Shortness of breath - arrhythmia, palpitations (Feels like someone sat on my chest)
* Notable improvements (Sometimes) when increasing salt or drinking salt water, but seems easy to over do it and 'go the other way'.
* Have been struggling to manage stress
* Often up 5-10 times a night needing to urinate.
* Urge to urinate often only a trickle coming out at a time
* occasionally bladder discomfort or burning sensation
* Too much sodium tends to give me hot toes/hands and a different sort of pain.
NHS utterly useless. I will ask them soon to test morning cortisol but they think I'm mad. I've had so many tests they want me gone. Being treated like I'm insane... anyone?
0 likes, 2 replies
sierra03643 MrSavio
Posted
Sounds to me like you very well could have primary adrenal insufficiency (Addison's Disease) You need to find a very ,very good Endocrinologist. They need to check all of your hormone levels such as cortisol, aldosterone, sodium and potassium levels, thyroid levels, estrogen, progesterone and testosterone levels. You need to be checked for Diabetes/Hypoglycemia. Diabetes can cause you to pee a lot and it can cause you to loose weight. Interstitial Cystitis also can. I have Addison's Disease and I can tell you when I need more hydrocortisone or fludrocortisone my bladder spases like crazy! I was diagnosed with Interstitial Cystitis, also called Painful Bladder Syndrome after I found out about my adrenal problems. I can tell you that a lot of people who have Addison's Disease also have significant bladder problems. Do not worry if 10 doctors think that you are crazy. You are not. You have a physical disease and you have been misdiagnosed. Sanjey Gupta, a neurologist and reporter at CNN said that when a patient gets misdiagnosed they have symptoms of mental stress so they often get misdiagnosed as having mental illness. Doctors also like to put you in the category of someone who has mental illness when they cannot get to the cause of your chronic medical symptoms. Ignore them and trust your instincts. Be your own advocate and do not let a doctor put you on medicine unless they have gotten to the cause of what is ailing you and the cause makes sense. Medications put a lot of stress on the body and they can prevent you from listening to your body and prevent your body from telling you what is wrong. When dealing with doctors you need to be persistent. I hope that helps.
MrSavio sierra03643
Posted
Thanks so much for your detailed response...it's a huge relief to hear that I might be in the right track...I try all sorts to stop the peeing... sometimes it seems I've got too much sodium and fruit helps...sometimes it's the other way and a bowl of salted oatmeal helps me sleep...sometimes I just needed but it's so hard to tell!
I've not had rem sleep for a long time at least not regularly and relationships with family have utterly broken down so this Crisis makes sense in that context.
The absolute worst thing is being exhausted but I lay down to nap and I have to pee every 2 mins. I was prescribed pills to stop me peeing. Great. I took oneonce out of curiosity and it felt like someone was just turning off the tap but all the fluid and sensation was still there. In factor was borderline painful and had side effect of impotence ...great for a childless young man!
Again thanks for your help I'll keep track of this thread.
God bless