Connect
← Return to Autoimmune Diseases and Fatigue
Discussion
Autoimmune Diseases and Fatigue
Autoimmune Diseases | Last Active: Oct 4, 2023 | Replies (544)Comment receiving replies
@johnwburns Hi, John. I have been diagnosed with a bunch of stuff, including Sjogren's and SICCA, rheumatoid arthritis, psoriatic arthritis, all part of primary systemic hATTRwt . I know the truth about how much fatigue you can get with this stuff. The sad part is that most medical folks don't have a clue about it. I write on this line occasionally because it helps me think through the issues, whether it helps others or not I do not know. I suppose some folks think I am trying to show off what I know, but I don't give a rip about that. What I do know is that just trying to keep this stuff straight in my head, and deal with the effects, is very tiring. I even changed from CPAP to BiPAP, and it has helped some. I get so tired some days I cannot even walk around the house without my legs and back giving out. I do not ever expect to get rid of this stuff because the doctors around here don't have a clue, and I cannot afford to make another four month trip to Mayo. There is only one way out..
Replies to "@johnwburns Hi, John. I have been diagnosed with a bunch of stuff, including Sjogren's and SICCA,..."
Hello @oldkarl,
You've been through a lot – a lot continues to happen – and I want you to know how much the Connect community appreciates all the insights and experiences you've shared.
We all have much to be thankful for (cliché, I know!), but then there is this illness, as you well know, which is chronic, relentless, imposing. Making sense, getting things together – things that have come so easily, now take so much time, and pain.
What I absolutely agree about is that it takes tremendous work, it can be draining, and it takes up unnecessary 'space' to "keep this stuff straight in my head, and deal with the effects," as you say. But, I also believe that the amount of space you allow your struggles to take is up to you. I admire your perseverance in "finding out the why" about your illness and, as I've noticed in later posts, a more "take it as you get it” attitude.
In all the misfortune or struggle that happens out there—to us, to those we love, to those we don't know — if we can find the capacity to hold compassion in our hearts, then I think we are that much closer to finding a way to ease the pain.
I've seen this so often within the Connect community, and in your messages, when you've reached out, shared and supported other members on Connect, @oldkarl. I sincerely hope you will continue to do so.
Connect
dear OldKarl: I know we have witten in the past but when i read your last post it was as though i was reading my health issues and pains. It is as though we are the same medically. It is not to often a person has all that we have. I have given up the Bi-Pap as it was still affecting my throat. I now sleep with many pillows and a bed that allows the control to adjust for up and down for both head and feet. I now can distinguish the difference between the pains from Rheumatoid and the Psoriatic arthritis. Have you gotten the anemia yet? Perhaps my age of 80 has brought this on but just in case be prepared. I do remember your being a senior. I know you have other affecting health problems as do I, but what a long list. Now the suffering from the incessant pains is really working bad on me. Anyway, take care and know that there are other people who do care. Peach