Hello Everyone-Joined in August-First Post

[LLWegeners]

My name is Larry, I live on the west coast of Florida. I'm married to a wonderful lady. We are both retired and struggling with health issues. She is having her second hip surgery soon and was diagnosed with multiple myeloma this year. I was diagnosed with GPA in 2017 and had kidney failure that caused me to be on dialysis for a year. My body has not been the same since that episode.

 

[JayCS]

Hi again, Larry!
- actually you posted twice in August, like here telling us that you're wondering about having fibro. Have you got any further with wanting to get that diagnosis?
Or does it help you enough knowing it might be that too and having a look at how we treat and cope with our symptoms?

GPA, hmm, Granulomatosis with polyangiitis, so systemic autoimmune blood vessel inflammation... seems that in itself has arthritis/joint inflammation and pain as a major symptom... - it doesn't explain your symptoms enough, though?

 

[LLWegeners]

@JayCS - Thanks for reminding me of my past posts. That goes to show what happens when you get old, you lose pretty much all memory. I was looking at some other posts yesterday and saw in one of your replies that you said "here in Germany". Are you an American in Germany or are you German with a really good grasp of the English language? The GPA disease used to go by the name Wegener's. He was a German doctor who discovered the disease. Yes, when the GPA was active back in 2017, every joint in my body hurt so bad and I was exteremly sick for over a year. It caused my kidneys to fail and I was on dialysis for a year. I have severe neuropathy in my feet that is creeping up my legs. I pondered fibro because over the years since the disease, I get these flares of terrible pain in random spots in most areas of my body. They are to the point that I jump when it happens. They're short lived but definitely get my attention. I've taken an online test that says I have it and have watched many videos on YouTube from doctors all over the world giving their description of the symptoms. I take a lot of different drugs now and don't wish to have a Rheumatologist diagnose me and put me on something else so I came here to read other posts and see what others are experiencing. I guess I can't tell my GP or my pain management doctors that I have it because another doctor didn't tell me I have it.
@Auriel - You're such a sweetie! My wife took such good care of me when I was sick so now it's my turn to do my part. Are you familiar with a website "HealthUnlocked"? It's based in the UK and it has groups for pretty much any kind of sickness or disease. I belong to about 4 but have not checked to see if they have a fibro group. I look forward to reading some of your posts. Take care of yourself.

 

[sunkacola]

@LLWegeners , have you been tested for the other disorders, diseases, and syndromes that could be causing your symptoms? If not, I urge you to get those tests rather than assuming that you have fibro because if it is something else, or more than one thing including fibro, your treatment options are much better known and utilized if you know for sure what is going on. Even if you see a rheumatologist it doesn't mean you have to take any particular medication if you do not want to, and you don't necessarily have to be diagnosed by a rheumatologist, for that matter. Self-diagnosis by utilizing the internet is sketchy at best and not a reliable way to determine something this important. I am just saying, get tested thoroughly so that you have the best chance of knowing what you are dealing with.

 

[JayCS]

German with a really good grasp of the English language?

Yep, that way round I spose...

The GPA disease used to go by the name Wegener's. He was a German doctor who discovered the disease.

Yeah, I had a look and saw that...

I guess I can't tell my GP or my pain management doctors that I have it because another doctor didn't tell me I have it.

Well, you could say you think/feel you have it, and/or ask what they think...

have not checked to see if they have a fibro group

They do...