Adrenal insufficiency and severe brittle asthma

bluebellstar

HI there all I'm wondering if anyone else has become disabled or in my case further disabled with bad side effects of prednisolone and withdrawal side effects affecting adrenal function and diagnosed with adrenal insufficiency?  I have been diagnosed as severe brittle asthmatic the past 13 years with numerous emergency hospitalisations with breathing difficulties and chest consultant and meds support.. I have had to have so much steroid medication over the years that now my adrenals are struggling to work and I have awful symptoms of muscular weakness& tremors, severe joints pains, extreme fatigue, sweats, breathlessness, high blood pressure, skin infections and slow to heal from bruises etc with skin thinner, pre diabetes, diarrhoea related to withdrawals and nausea. Been a nightmare past 2 years and am under endocrinology and GP care. I also have other complex diagnosed conditions, hypermobility, fibromyalgia, m.e., IBS, diverticulitis, liver function problems& enlarged spleen, B12 insufficiency, gerds, complex PTSD, BPD, anxiety & depression, high cholesterol, mobility issues from osteoarthritis and lymphodoema& probably forgotten a few others so much health issues! Am on a lot of medications& am housebound& bedbound a lot and also am a carer to my mentally disabled daughter handling communications to her medical professionals and education and oversee my sons education too as he is home educated and is just joining an online school. Am extremely high risk for covid am on shielding list and immune suppressed. So difficult to find some normality. I enjoy arts and crafts and am even enrolling in part time online college this year 6 hours a week to assist my son with his dyslexia spelling difficulties and my daughters reading difficulties. I am very independent minded and can drive on not so ill days and like to get out to places by the sea or in nature but need assistance from my children as my young carers or their dad. Anyone in a similar position to me?  Been told I will probably need to go on to hydrocortisone for life sometime in the next few months. Michelle x

Tori_Scope

Hi @bluebellstar Welcome to the community! Thanks for telling us some information about yourself, as this'll help other members to get to know you a little better, as well as allowing other members with similar experiences to connect with you. 

I'm sorry to hear about the negative side effects you've had from your medication. Are the endocrinologists and your GP working on how you get you feeling a bit better? 

It sounds as though you've got a lot on. Are you receiving any support for your C-PTSD, BPD, anxiety, or depression at the moment? 

Has your son started his online school yet? How's he getting on?

What are you studying at college? It sounds like a good way to take your mind off of things and learn something new

It's good to hear that you enjoy arts and crafts as well. Perhaps you'd like to take a look at other members' arts, crafts and photos, or post your own, on our KaleidoScope thread? 

LouRoots8

To answer your question yes I have adrenal insufficiency secondary to steroid use. 

I am a severe asthmatic. T1 diabetic. Plus a very long complicated list. Are you under a specialist asthma service for your asthma? 

I’ve been on steroids 15 years so I understand how awful they are and the side effects they have. Asthma is also very misunderstood when you have it at the severe end. I’ve managed to reduce my steroids since being on a biologic treatment that is only available at specialist hospitals so if you aren’t known to a specialist centre ask to be referred. 

Has your endocrinologist given you sick day rules for when you adrenal suppression? 

The way I deal with my health issues is to care plan all my needs. They are in a pink folder. It makes me feel more in control when there isn’t much I can control.