You have such a positive attitude. I think you will be fine. There is no doubt you have a lot on your plate but in time with the right therapy things will calm down.
I know what you describe with the doctors in a hurry oh too well and I'll bet many others here know also. I have had to jump in mid sentence many times to make sure I get heard before he rushes out the door. One lady described her doctor as always having one hand on the door ready to run after the first question. they just never seem to have enough time. I had two older doctors in another state who took the time to explain the disease, the lab work and answer any questions you might have. so I know they are out there somewhere. Just way too few of them.
I do have many of the symptoms you describe and some with organ involvement in the last 2 years. so know the battle you are fighting. my hands and wrists look as if i have never taken anything at all and i have taken it all including rituxan, cytoxan, enbrel, remicade, humira, orencia and the list goes on. I was never treated for the lupus component of the mtcd. however, it was not on the radar at the time but could be why I never responded to anything for very long and suffered so much joint damage in the wrist and fingers, shoulders, elbows, hips, etc. lupus can do that as well as RA. Just do what you can, maybe you can only clean for 15 minutes at a time then rest. maybe you will only be able to clean one room a day or a week even. maybe just focus on the bathrooms and kitchen taking frequent breaks. maintaing throughout the day instead of an all out cleaning. recruit help. I know it is diffcult when you are used to doing things yourself. i am the same way and no one can do it the way I can. My dh will help clean but don't ask him where he puts things. it is more like hiding than cleaning so I would really love to do it myself but realize I have to put me first and my health first and means getting help when i need it.
I don't have any classes at the moment. I signed up for water aerobics a liitle while ago but didn't keep my appts. the pain and fatigue made it difficult. I have been training to do dialysis from home where they dialyze you in training. afterwards I am pretty spent. tai chi is on my list of things to do next. I do stretches in the morning and sometimes will go out in the sun for 5 minutes or less to stretch. can't have too much sun exposure with some of the meds and lupus symptoms. but I notice a big difference in my flexibillity when I stretch. I had to stop my PT becuase of the dialysis training but will pick that up again next week. I have been searching high and low for PT that involved water therapy. I am a big fan of water exercises because the body is light in the water. I don't drive at the moment so fitting some of my ambitious activiities can't always be done and sometimes have to wait until the weekend when I can have help with the driving.
However, I love to learn. It makes me feel alive so I imagine i will always be taking some sort of class here and there. I am interested in a writing class now and training for something I can do to earn money even if I have to sit in a chair most of the day to do it. will talk about that here one I get started. in the meantime I am looking for a medical transcription job because as I said before in a previous post, I was preparing for physician assistant school when i became ill. I held on to my medical terminology in hopes of returning to it someday but never did so I put it to good use and typed medical reports. I was able to earn a little money to contribute to the household while caring for my total care daughter. now that it is just me and dh and i have gotten the training out of the way for dialysis, I am looking for another transcription job. there are many companies out there to work for but finding the right fit with a flexible schedule takes time.
I take care of my body, I stay active. I try to keep a positive outlook and take it one day at a time. that's all you can do. Before illness I did everything fast, walked fast, talked fast, everything fast. Now, I pace myself. I laugh as often as I can. Laughter is the world's best medicine as they say and I agree.
Wishing you the very best and hope you are having a comfortable and peaceful day today. take it easy. slow and steady wins the race.
Hi Premed & welcome to the Forum. I have a UCTD diagnosis and just started treatment with Plaquenil last December. I also have fibromyalgia, which I've had for more than 10 years, and I did feel kind of "brushed off" like you describe with my rheumy when the other symptoms, which I knew were different than fibro, started up. My lab results are generally negative for specific AI disease, other than a high positive ANA. When I have flares, white cell counts go down, CRP is sky high, and my liver enzymes get elevated, but still negative on the specific antibodies.
My rheumy finally told me she suspected Lupus would show up clinically at some point - my symptoms all point strongly in that direction. She also suspects Sjogrens. I've done lots of research, and certainly been helped by the kind folks on this forum, in terms of my own understanding of what's what, and how to cope. But I understand completely about the frustration and even embarassment of all that other people do not understand about what your daily life is like. Even family. My husband gets it - for the most part. He does more than his fair share too much of the time. But I would say that most other family and friends may try to understand, but they have no idea, really, and without a "specific label" to toss out that they can comprehend, it's like you always feel as though they're wondering if you aren't just a bit of a hypochondriac, or a whiner or whatever, especially without really looking as sick as you feel. I think it's one of the hardest aspects of this diagnosis. I dealt with it for a long time with fibro first - but the CTD the last few years has really been life changing - and I'm still trying to figure out how to cope - it's much harder now.
I have learned to say "no" when I need to 90% of the time. Pushing beyond the "safe margin" for energy output is such a setback that I have gotten much better at being aware of my body. But it's still a fine balance, and sometimes the body doesn't communicate very well - or you just have no choice - and back you go, paying the piper in hours and days of feeling unwell and unable.
You've had plenty of good advice from others. I really just wanted to tell you I truly understand being flummoxed by a diagnosis that seems like such a NON diagnosis. It was good for me to read your posts. We have to work hard at not wasting energy on trying to make other people understand something that I think you'd really have to "live" to understand. I remember when I became pregnant with twins. Prior to that I had believed that "morning sickness" as it was called then, was simply mind over matter. Ha! It was my first lesson about the arrogance (and ignorance) of good health.
You will do the best you can - that is clear from you posts. Let that be enough.
OMG, I am so glad I found this thread. I appear to have many of the similar symptoms as you, pre-med. I am a 41 year-old male who has been living in chronic muscle/joint pain of unknown origin for close to 13 years. However, just last year I was diagnosed with persistent Lyme disease (IgG+ Western Blot). But I knew it was only one piece to this complex puzzle. I went to a new neurologist today and he STRONGLY suspects I have small fiber neuropathy. I previously had no idea what it was. When I told him I started getting facial and abdominal pain immediately after a terrible bout of mononucleosis in 1997, he said that it can be brought on by a viral infection like mono. It is as if my body still thinks I have mono, and it has been attacking my peripheral nerves all of these years. I am no doctor, but this theory appears on the surface to have been corroborated by recent bloodwork, which indicated my Epstein-Barr titer was off the charts (over 4000). My Lyme disease doctor (a Mayo-trained Doctor of Internal Medicine who has been practicing for 43 years) suspects that Lyme had degraded my immune system and made me vulnerable for the EBV. He said it is also is probably why I had the mono as bad as I had it. Briefly, here is what I have been diagnosed with so far and my history of disease:
-Small-fiber neuropathy (suspected)
-Chronic Lyme disease (with a co-infection of babesia)
-Chronic Fatigue Syndrome
-Metabolic Syndrome (pre-diabetic)