tired, tired, TIRED!

[gretchenb5]

Hi everyone! In case you didn't read my introduction, I'll give you a brief one. I'm Gretchen, 37, live in the US (Troy, Michigan), and after about 10 years of lots of symptoms, I've finally been diagnosed with connective tissue disease and Sjogrens. It runs in my family, and my dad is going through some very similar stuff right now, too.

Like a lot of you, I went to too many docs who told me it was stress, depression, a virus, or just separate "problems". It took my husband telling my internist that I could no longer drive, that he has to carry me to bed at night, and that I'd been having to lay down in my office just to get up the strength to walk to the car that kicked him into high gear. He referred me to a really good diagnostic rheumy, and I found another really good rheumy through the University of Michigan (I saw them both!). They agreed that I'm not a straightforward case, but that I do have a lot of overlap symptoms of lupus and UCTD, as well as Sjogrens.

My doc took me off of work and put me on Plaquenil, which I've been on for just over 2 weeks now (I know it takes a while to kick in). I'm also on some pain meds -- all of the antiinflammitories I've tried (and I've tried a bunch) KILL my stomach (I have 2 ulcers from Vioxx), and I'm lucky enough to be allergic to prednisone! But the fatigue is amazing... I can't even walk down the stairs to get the laundry!!

I have a great support system, but I miss working because I love what I do (I'm a developmental psychologist) AND because it helped to keep my mind off of my illness. But I know right now I couldn't function there -- I work with young kids with disabilities, and much of what I do is down on the ground play therapy and evaluation. It's physically and emotionally draining -- I'm the one who tells parents their child is mentally impaired or autistic or whatever the diagnosis is. I've been very involved in training others and was in the middle of my dissertation on ADHD in preschoolers when this all hit.

I'm having a really hard time just sitting still. But whenever I get up to do just about anything, I feel way worse. I'm scared, and I know my husband is too. I don't know what my triggers are (although I think I'm slowly figuring them out), and I don't know how long this "flare" is going to last or what to do to make it better. I feel like a slug most of the time.

I'm so happy I'm being taken seriously now, but I'm scared about what the future holds. And I just don't know how to deal with this bad flare -- I've been to the ER twice in the last 2 weeks, and to 4 doc appointments in the same amount of time. We're still doing tests (thyroid, stomach and kidneys are also problems), and I'm just so warn out. I guess I just wanted to vent.

Thanks for listening...

gretchen

[redrose77]

Hi, I am just down the road from you on the OU campus. I was recently dx with SLE (lupus) my rhuemy has decided I am disabled and given me the permanent diabled parking permit and wants me to stop working and take time off school. I am trying to find a way to do most of what she is asking w/o lossing my housing. Not an easy task. Hope you feel better soon. I have been on plaquenil for 6 weeks and prednisone as well. I took vioxx for a couple years myself. I miss it. I wish you luck on pain relief there are pain specialists who might be able to help. The women here are knowledgable and will be very helpful. Good luck.

[raggedyann1]

Gretchen,

Not being able to work for awhile is very difficult for anyone. Our cultures put so much of our identiy into the type of work we do. Even Psychologists, despite all your training and wisdom, still need help thru these times. This is an excellent place to come and vent. We understand what you are going thru.

There is a grief cycle most of us go thru when we have a diagnosis of a chronic illness that is going to be with us the rest of our life. For some of us that end up really sick we have multiple grief cycles as we have to give things up.

HOWEVER, most people with connective tissue diseases life fairly normal lives once their meds have kicked in and the illness is under control. The fact that you are allergic to prednisone possibly eliminates the medicine to get you over the hump till the plaquenil starts working. I say possibly because I am wondering if you are also allergic to Kenalog? It is a synthetic steroid that is usually given by injection into your tush.

I also want to comment on pain meds. I hope you are taking them at the first sign of pain? They are far more effective that way. Also I hope you are not trying to go without them out of fear of addiction. The research has proved that pain patients who take narcotic pain meds are not likely to become addicted to them in any way except physically. When you reach the point that you no longer need them on a consistent basis you will need to wean off of them.

Let us know how things go,
Karen

[gretchenb5]

Thanks, Karen. I sure am going through the grieving process, just like a lot of people on here. It's amazed me at how much being taken off work threw me for a loop -- I have been sick for quite a while, and it was almost like my doctor finally decided right then and there that I was REALLY sick and he needed to pay attention. And yes, I have a lot of my identity tied up in what I do for a living. Now I'm challenging myself to figure out some creative ways to keep working within my new limits.

I also see what you mean about people in different stages of disease continuing to grieve what they have to give up. I feel like I want to hug them all.

I am going to check with my doc about the synthetic steroid you mentioned -- that has not been brought up yet.

I'm getting better at taking my pain meds without feeling guilty, and I know of the research you mentioned. It's different, though, in knowing, intellectually, that it's ok do what my body needs, and emotionally worrying about addiction. But I'm seeing the relief it provides. My big problem at the moment is finding a local pain doc to manage this part of the disease -- my internist has given me a script until I find one, but doesn't feel comfortable managing, which I understand.

Don't even know if this is making sense... I feel like I'm rambling a bit today.

gretchen

[meg4340]

Hi Gretchen!

I'm so glad you're getting some answers, but also sorry that you're having to deal with this illness. After dealing with lupus and fibromyalgia for almost 11 years, I can assure you that there are better days ahead. For me, it's been like a roller-coaster....good months, bad months,....good weeks, bad weeks,....But, everyone is different. I am a stay home mom, but can't imagine having to work and battle the pain and fatigue...altho, many courageous women on this site do just that. Please know that we are all here for you and happy to help answer your questions, based on our limited knowledge and vast personal experience :)

Take Care!
:flowers: :wave: