I am a 67 year old man who has of late been very ill. On top of diabetes I now have a incurable autoimmune disease called Bullous Prehemgoid. Taking steroids and I have been ravaged with terrible fatigue like never before. I can barely walk now and have fallen a few times. I am not able to care for myself.
I think I am going to die.
I’m sorry this is happening to you, Skycop51! Haven’t heard of that disease, so can’t offer help there, but want to tell you to hang in there! Have someone with you? Need to go to hospital? I know they could help! Wishing you well, Skycop! ☺️
Hi Skycop! So sorry to hear of your troubles.
Don't really know whether this is the right forum for you (PMR/GCA). However, one of our experts will be along soon no doubt.
Lots of us have days when we can't walk/are exhausted.
It's not "easy" to die. Can't you get some sort of home help (even if you have to pay someone to help with the housework).
You're not alone - you have found us!😊
Hi skycop, you really need to seek help from your dr. You dont indicate where you live. Surely if uk your practice have arranged for some care. You are understandably sounding very depressed. I had to look online to find out what Bullous Prehemgoid is. It looks like the main thing us to keep the blisters clean so they dont get infected. Your dr/pravtice nurse should help with that. As you probably know you need to keep hydrated. The sores and bluster can leak fluid and dehydrate you. You may have infections raging so need to see the dr. Get a zimmer frame to help mobility. Theres no shame in that. I have been using such things since i was 40. I am not sure we can help much more unless you have pmr/gca. See the dr about the steroids and dosage...they can make you feel mentally disorientated. There are other meds you can be prescribed.Perhaps a topical cream for the sores. Good luck and best wishes 🌻
Ps. You dont say but perhaps you need to see how diabetes is doing with you being on steroids. I know they sent my hba1c out of whack and i felt terrible.
I am so sorry you have Bullous pemphigoid. What dose of steroids are you on? Autoimmune diseases do tend to cause deathly fatigue. I understood that Bullous pemphigoid can go into remission and hopefully the steroids will help.
Sending prayers to you at this difficult time in your life. You simply must tell your doctors how desperately you feel. X
I think you need to talk openly with your doctor about your fears - and I'm afraid there is probably no-one on this forum who can really help except to listen and provide sympathy.
I don't think you will die - you will feel pretty ropey, most of us with autoimmune disorders do. How much do you know about your illness - other than that it is rare?
Firstly you are not going to die at such a young age, just remember that you are going through a rough time and being diagnosed with a new autoimmune disease is enough to scare the pants off any of us.
Death is enviable for all of us eventually down the line, but thinking that your new diagnosis is going to bring your life to a sudden standstill is a big mistake on your part ...with help and the correct treatment you will soon be back on your feet.
Some people are lucky reaching their 60s, 70s and sometimes 80s breezing through life without any ailments..
Some of us get hit with all sorts of ailments and bad luck with our health. Like most of us here on this pmr forum.
As others have said to you, we feel you are in a very bad place at the moment. You really must seek help from you GP and tell him about your fears. It's nothing to be ashamed of. I think at sometime in life we have all been in your shoes.
Feel free to come here to our forum if you need a little more moral support. We are always here and ready to help.
YuliK. Age 76.
Hang in there Skycop - there are days we all feel bad and sometimes VERY 'bad' this doesn't mean you will always feel this way. As others have suggested here do talk more with your doctor about what else you can do - anything and everything to feel a little better. The really supportive crowd on this forum won't themselves be 'happy' until we hear you are improving - so hope this can happen sooner than later for you !!!
All good wishes - and sending the 'imaginary' sound of a little bird singing ....
Oh no how awful. Is your healthcare team not supporting you. I think you need to speak to them as soon as possible and tell them how scared you are. If you have a relative who can do this with you it would probably help.
Wishing you well
You sound quite down, understandably, and obviously need support, care and advice. As said on here do seek the support of your GP and let us know how you get on.
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