New here

I saw a rheumy last week & have a preliminary diagnosis of Fibro.

The last week of August, I started having severe pain my my wrists. Within a week, that pain moved into my fingers, elbows, and knees. It started involving the muscles in my arms & legs, my muscles started twitching and I was so dang tired. I'd come home from work & go straight to bed. I started feeling like I had done a massive workout, my feet felt like I walked ten miles. Random spots on my body started feeling like they were bruised.

I saw my GP a couple times. I had a low positive ANA and a positive RA Factor. He referred me to a Rheum and the month and a half long wait began. We tried Celebrex and Volteran pills in the meantime which did nothing. My WBC was a bit elevated and we assumed there is an autoimmune issue going on. I focussed on RA because of the positive factor, but I never showed any signs of inflammation at all. My SED rate was normal.

The Rheum read over the pain journal I brought in, did the tender point test and more blood work. The points didn't send me over in pain, but were definitely tender. I forgot to count how many were 'positive'. After he told me what he thought was going on with me, I did some serious reading and yeah, it makes perfect sense. And is pretty scary. While we're waiting for the blood results, he has me trying gabapentin. I'm taking 100mg three times a day (I'm on day five) and so far no results at all. On Friday I'm supposed to move to 300mg twice a day. I see him again on the 29th.

I have good days, where I'm just aching but can get by... and bad days where it takes everything I have to get things done. I had a sick 18 month old last week and it just about killed me.

I'm just a bit out of it with this. The fog, forgetfulness, fatigue that comes & goes, the moving pain (but ALWAYS in my hands). I have a clerical job. You can;t get much more sedentary than that... but it is just so freaking difficult to get through the days. It scares me. What if I get to the point I can't work any longer? Or lose my job? Working full time then coming home to be with my daughter is just too much. After work I just want to lay down, I'm too tired for anything else. My house is falling a part. My husband does a lot & is picking up the slack but still! I want to play with my daughter!
I've read the spoon theory... and work takes up all my spoons. I left the house the other day & my husband told me our daughter would run to the bedroom saying MAMA!? She's 18 months old and knows Mama can normally be found in bed now a days.

I'm sorry, I just had to vent. I don't know what to expect. I don't know how I'm going to deal with this. I'll have a day or two where I can function & I get slightly optimistic that things will be fine, then the next day I can hardly move.

And for the record, I haven't had any traumatic events occur. My daughters birth was a c-sec with a tubal, no complications or anything. No abnormal stress going on. No blood relatives with it. This just came out of no where.

It was a Diclofenac (sodium maybe?)med. I think I saw Volteran somewhere when I had googled it and that's the name that stuck.

Driving for more than 30-45 minutes really hurts, and I live in a small town. The nearest towns to shop in are 45 miles away, go fig!

I used some menthol gel on my hands when they got bad a couple times. It seemed to work all right - I just had to remember to not touch my eyes.

I'll talk to my my doc about the gels when I see him again.

Hi Sapoho,

Sorry you're having to deal with all of this. It definitely makes our lives - welll - challenging! You never know what symptom is going to dominate on any given day.

I hope you do stick around. This forum has helped me so much. I don't know what I'd do without it....we understand the fog, the frustration, and of course, the PAIN!

Hope you have a better tomorrow...well, dang it, I stayed up too late again - it is tomorrow! :)

Debbie

Hi sapoho. I am new to this forum as well. I have been dealing with fibro for almost 4 years now. At first it was overwhelming. I was like you. Always exhausted. I could barely get through my work day. I had to have someone drive me home because I would fall asleep behind the wheel. Then when I got home, I would collapse in bed. Because I was so energetic and outgoing before fibro, I was devastated. I was convinced that I would never be normal again. I cried a lot. I wanted to be the mom I was before fibro. Six months ago I had a flare that started and was really bad. It lasted almost 3 months. Everyday was a struggle. But it forced me to become more proactive about my fibro. Now I have found what seems to be working for me. At this point, I am in a good place. I am off all my meds and am finally sleeping through the night again. The point of my post is that you will have hard times but it is possible to improve. Just keep working at it until you find what helps you. I tried a new thing my doctor told me about. At first I thought it wouldn't work, I really didn't even want to try, but I had nothing to lose. Now when people ask me what I am doing because of how well I am feeling, I tell them but they think I am crazy. I don't care anymore. I know that it works for me. Things will get better, just try to stay positive and keep researching. Don't be afraid to try new things in your quest to improve your health.

Post Edited (vbway) : 10/16/2012 8:57:17 AM (GMT-6)

That is why some of us have trouble caring a job. We never know how we feel.

Hi sapoho-I'm a newbie too-and everything you wrote-could've been written by me!! I am going through the EXACT same thing right now-right along with the husband that really isn't "getting" it. I so feel for you. I reached my breakling point and joined the forum today. Hoping to find some answers-but mostly some support right now. I am so behind on my housework-and I am a "neat" person-so its extra upsetting-and today I couldn't even make it to the grocery store. I have a 2 year old, and I feel terrible she is stuck inside. Took everyhting in me to bathe her today. I know I need to find some kind of help, I cannot keep going like this. So funny, I was an avid exerciser, and my husband is too-and he also thinks exercise is what I need. How I would love too! I have went from running to barely being able to complete a half hour beginner yoga tape. What I wouldn't do to feel like my old self.

Best of luck to you!

Hi Sapoho.

I'm new here too. I think when one person is diagnosed with a chronic illness, so is every one in the family. All are affected by it. But (and I remind myself of this, when I feel singled out for this disease) crap happens to everyone (just different varieties of crap), but children are resilient, marriages are strong. A lot of it learning how to be vulnerable, and to accept how much we need the people in our lives, I think.

I've found the book How To Be Sick http://www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264 very helpful. I'm not Buddhist, and there is no religious slant in the book other than being present.

Thinking of you.