View Full Version : Hi all...

01-06-2009, 10:34 AM
I know it's been a while, but I feel like I get to the point where everyone I speak to, I'm complaining about how I feel. Things haven't improved too much. Still tired, mucles and joints ache, spinny head and now for the irony, insomnia.

I get like 1-2 days a week where I feel "normal" but can find no rhyme or reason why, and believe me I look. Some days start out awful and then end great. I hate to go to bed....wake-up and the good is gone. So it's a bummer.

As you know, where I last left off, my doctor basically told me that the symptoms were all "real" but had an "emotional basis". Made me so made. I thought once I had a diagnosis, I wouldn't go through this. My Rheumy just threw up her hands. So I started looking for new support thanks to support here. Went to a new Rheumy and it was sort of a weird appointment. She was busy and distracted, hinted that I might need to repeat my kidney biopsy (HATED, HATED, HATED it) add to the fact that I don't think I need one, my kidney's have been stable when doing the blood test as far as creatinine clearance, etc. Tomorrow I go to see my new primary doctor for a physical and will implore her to help me.

If this isn't my Lupus, I'm scared to know what it may be. The drugs I've taken (Cytoxan, Imuran) can cause cancer...so that monkey whispers in my ear from time to time. All I know is I'm wiped out and not myself. Christmas was ok. I had two weeks off, but felt a prisoner to my bed. Did take the time to enjoy what I could. Found out I had an "ear" infection when I went in for a lump that formed behind my knee (Bakers Cyst). I'm on my second round of antibiotics for that. I feel a little old to have ear infections...

By the way, I went to talk to a councelor (sp?) and to be honest. It was refreshing. It was apparant to her that my symptoms are causing my duress, not my duress causing my symptoms. She can see how much I want to re-engage in my life. I knew that, but it's nice that someone else sees it. My wife who has been a big support is starting to be frustrated and whether she means it or not, I feel the brunt of that frustration. Perhaps I'm just sensitive to things right now. Feels like I'm losing everything I worked so hard for and I can't do much about it.

I'm glad to have you all!! Your words, advice and experiences really, really help.


01-06-2009, 11:19 AM
Im so sorry to hear you are going through this all, but glad you have your wife for support, second opinions are always helpful, im glad i never stayed with my first rhuemy (useless ****).

Dont be listening to monkeys they sometimes say things that are not stritckly true :shock: , i hope and wish you well


01-06-2009, 12:24 PM
Hi Larry,

It's good to hear from you. I was wondering how you were doing. I'm sorry to hear things are not well. I am glad that you are seeing a couselor though. I see one once a week, and between her and the people here, I manage to stay somewhat positive most days.

It's funny, I also thought that all the B.S. from Dr's and other Specialists would end after my diagnosis. It didn't. I still have to deal with idiots who try to un-diagnose me, or tell me my problems have an "emotional basis". I think that's just what they say when they realize that their medical education did nothing to prepare them to deal with people suffering from an autoimmune disorder.

I'm still looking for a good Rheumo, there's not many good ones out there I guess. At least my family Dr. came right out and told me he has/had little to no experience or detailed knowledge about Lupus, but he promised me he would open the med books and learn. And to his credit, he has become very knowledgable. Too bad he isn't a Rheumo.

I try to fixate on those who understand, like my counseor and my MD doctor, and I try to let that get me through all the other bad encounters I've had with those in the healthcare industry. There are people who understand, but they are hard to find. Anyway, it's good to talk to you again. Don't be a stranger. Talk to you later.


01-11-2009, 03:57 PM
Hey, Larry! It was good to see your post. (I've been mostly absent, too...so I only catch random posts now and again.)

Sorry you're still dealing with bonehead medical practitioners. There are plenty out there, as the posts here can attest to. No, diagnosis isn't the magic solution I'm afraid. I still worry every time I have to see a doctor - that someone will try to second guess what's going on, or give me the 'fish eye' about a symptom. The tell-tale question is always "Are you under any stress right now? Feeling anxiety about anything?" You know where they're going when you hear those words! To be fair, stress and anxiety really do a number on anyone with inflammatory problems, particularly something like lupus. Seeing a counselor is a GREAT idea. I should be doing the same, but never quite make the call. I find myself isolated and I just hate...hate....hate to talk about my illness with most people. Even family....I know everyone is tired to death of hearing about it. I'm tired to death of thinking about it!

I'm glad your wife is supportive. Don't be too freaked out about her being frustrated. It's natural....being a partner to someone with a chronic illness has got to be a challenge, right? Maybe SHE should talk to someone?

Good to read your post...hope things improve.


01-11-2009, 04:53 PM
Hugs Larry

Good to see you on the board :)

Stress aggrivates lupus....NOT causes it ... so :P @ you're dorky doctor. Sounds like you have a good therapist or what ever ya call her. Maybe you should recommend her to your doctor! :D

01-13-2009, 06:33 AM
Thanks for everyone's response. I did go in and see the new primary last Thursday. She took so much blood, I don't think I had much left. I heard about the first results and they were OK. No Diabetes, chest x-ray was OK. No infections. The other results still pending.

She has me going back to see my Nephrologist as she was concerned about the protein spill (I've had for years). She is also sending me to a different Rheumatologist for another opinion. Can't get in until the end of February though.

Right now, I'm dealing with some insomnia issues, night sweats (which I hate) and sweating when I do anything. Spinny head is the most annoying issue (get light-headed). Stomach has been hurting (left side) especially in the morning. My heart skips seem to be coming back, these are odd though. When I'm on antibiotics they go away. If it was because of some anti-inflamitory affect, then I would expect that Prednisone would make them go away and they don't...I remain puzzled with this.

I also have this swelling on my eyelids (nose side). Doesn't bother me necessarily, but just puffy looking.

Any of this sound familiar? I find that knowing others have experienced the same thing, makes me feel more "normal".

This week I go to a sleep study. Not looking foward to it, but I'm trying to be a trooper and take a look at everything they suggest. I hope all are doing well. It's 17 below zero right now and I'm looking foward to the Spring....


01-13-2009, 09:48 AM
Dear Larry:

I always have the night sweats and I believe they are at least partially if not totally related to the Lupus. If they are not from Lupus then they must be totally menopausal. They have been going on for at least 15 to 20 years. I, frequently, wake up in the middle of the night with my sheets drenched with sweat.