Posted 5/22/2011 6:13 AM (GMT -7)
Hmm maybe you are very sensitive to it? I can take it up till 4pm and still fall asleep ok if it's after 10pm. I cut out all caffeine after 12pm too.
My fibro slowly started 6 years ago around the same time I was diagnosed with stage 3 endometriosis and had 3 very large fibroids removed. In fact I thought the shoulder/neck muscle pain, sleep issues and fatigue I was feeling, was totally endometriosis related.
Before this started, I was extremely active. I went to the gym 5 days a week, I am 5'7" and weighed 124lbs. I was a pretty happy person. Busy, I lived in NYC...I had fun. but sometime around 29yrs old I started having bowel issues, which turned into extreme constipation. it ruled my life and it was something I did the best I could to hide but it effected everything. I was so sick. Around that time I began to have sleep issues. I would always wake up with a sore back and feel exhausted regardless of how much sleep I got, which was a lot. Around that time I was under extreme stress at work. Working late all the time in a job I hated. But I felt compelled to give the job 150% as I had come off a long period of unemployment after the dot.com I worked for went under. I believe this intense period of job related stress and pressure may have potentially kickstarted things, but it's hard to say.
The constipation was unbearable, it would get so bad, sometimes 5-6 days would go by and I would be throwing up. My periods began to get insane. Heavy bleeding, bloating and pain. Then my libido, which had been pretty healthy, just vanished. I gained 25lbs in 3 months and could not figure out why. Emotionally, I was a wreck. I suspected Endometriosis after researching my symptoms online but it took years and 3 different gyno's to take me seriously. I literally just found an endo specialist, made an appt and said " I truly believe I have this, please take me seriously." After an exam it was confirmed and surgery was scheduled. Surgery revealed stage 3 endo and 3 apple sized fibroids.
I had hoped after surgery I would feel better. The extreme pain from the large fibroids was gone and the constipation was not as bad but I still had sleep problems, fatigue, muscle pain and bad periods. I did lose about 10lbs in a few months. My husband and I began trying for a baby, as I was 34 and was told the endo could come back and this was the time. After 6 months of trying I started Clomid and got pregnant on the first try, with twins.
The pregnancy actually improved my symptoms. I had more energy, no constipation and was not as sore ( until the end when you're just huge and uncomfortable) After the babies were born via c-section...my health just took a massive dive. 2 months after the girls were born my morning back/neck pain was getting so bad I was having a hard time almost walking the first 10 minutes. I developed intense joint pain in my feet and hands. I was a total zombie but of course assumed it was having twin newborns. Everything hurt, I couldn't function and I developed postpartum and felt angry and sad . After routine blood work I found out I had Mono ( Epstein Barr Virus ) I was advised to get as much sleep as possible ( not an easy thing to do with infant twins.) For months I felt totally destroyed, my lymph nodes hurt, my neck, back and head just ached 24/7 I felt like things were getting worse even though the twins were sleeping pretty well at that point.
After 4 months the depression lifted ( should have taken an anti depressant but I really didn't want to admit to myself I had postpartum.) But I still had trouble getting into a deep restorative sleep and even after getting 8-9 hours of sleep, i felt like I'd been up all night. My body was still in pain and I still felt like I was getting mild fevers and had swollen lymph nodes. I finally saw a Rheumatologist. Initially she put me on a 6 day dose steroid pack. I felt FANTASTIC, awake, pain free "normal". But when all my autoimmune tests came back fine ( ANA, C-Reactive Protein etc..) she was stumped. My Vitamin D was 15 so I was put on a high dosage of that. It went up to 25 but then dropped again a month later. I am back on a high dosage again. I've had low vitamin D for at least 6 years. I've been tested for Celiacs 2 times, had a full thyroid panel complete with ultrasound, some tiny nodules and it's on the larger side of normal but over-all all tests confirm it's ok. My cortisol levels were fine. It's been suggested I get and endoscopy and colonoscopy to confirm it's not celiacs but I had one 6 years ago before I knew I had endo and there was nothing found so I'm reluctant to go through that again. I was put on meloxicam and it helped a bit with the arthritis but not the muscular pain.
My fatigue, neck and now cervical spine pain is so bad some days it makes me feel confused and spacey. I have an MRI scheduled for both head and cervical spin, i would be shocked if it doesnt show a herniated disc some where. So far strangely enough it's Adderrall that works best for me on pain, energy, clarity of thought and general mood. Maybe that's not so surprising. I think i would benefit from an increase in dose. Savella hasn't helped too much for pain yet but it totally changed my periods into totally normal pain free no bid deal events. Literally for that reason alone i would stay on it. Although I'm trying to find out why it would do that. Is there an estrogen connection or hormonal connection with SNRI's? Not an easy thing to find. I still have flares about every 2 weeks. Some worse the others. Personally i think i have CFS but it has not been officially diagnosed. The good reaction to steroids suggests inflammation and a potential autoimmune thing starting...but until my tests say different it's a wait and see.
I am considering seeing an immunologist and then doing the endoscopy... but i gotta be honest...I need a break. I am tired of seeing doctors who can't help me. I've been lucky, at least they listen and have tried. I work/research hard to find good one with excellent bedside manners. I don't talk about my health problems with many people at all. I hate that I don't have a solid diagnosis and that they can point to one thing causing all of this. I don't want people to think I'm depressed or lazy or worse that I'm a hypochondriac so aside from my husband and family and therapist who deals with chronic pain patients. I don't confide in many about what's happening. But i worry a lot about what is happening in my body. Am I setting myself up for cancer? If I feel this sore and fatigued at 36 what will 46 feel like? My husband is very understanding now but clearly the pain can effect my mood sometimes, I can't be easy to be around always. Where the hell is my libido? I miss it! And lastly, I don't want my children growing up with a sick mom...a mom that sat on the couch, had to take naps, couldn't do a lot of physical activity. I've already had to limit a lot of walks with them because I get so sick and worn out for days after. And I'm pissed off...I wasn't this person 7 years ago. I was a super active, happy dare I say sporty person. I want that women back and I'm sorta losing faith I will.
Okay well that was a lot. :(