Posted 11/8/2011 5:38 PM (GMT -6)
I usually post in the Fibromyalgia forum but I'm really at a loss here and wondered if anyone has any advice for me.
I'll give you a super abbreviated medical history. Before 27 I was happy, super active ( gym 5 times a week) skinny and slept well. This all changed sometime around 27yrs of age. It started with digestive issues, mainly constipation. Then developed into IBS as I had problems with both extremes. Next I developed anxiety and low level depression around 30. TWas prescribed Paxil, felt totally numb, lost my sex drive and gained 30lbs in 3 months. Naturally, I went off of it but the weight would not come off and my sex drive was totally gone. I soon developed very painful heavy periods and trouble with insomnia. Insomnia turned into unrefreshed sleep. Soon I developed really intense fatigue and muscle weakness. I would leave the gym and sometimes wonder how I would make it home some nights I felt so weak, tired and just out of it. Eventually I stopped going. At 31 I was diagnosed with Stage 3 Endometriosis and 3 apple sized Fibroids. Had a laparoscopic surgery and although the pain was decreased I developed this deep muscular ache, mainly in my upper back, shoulders and neck. Although my insomnia seemed to go away I stil had unrefreshed sleep. My anxiety got worse too. My face would get so dry I couldn't put make up on anymore. Skin would just flake off my nose, it was like a constant case of dermatitis. My nails became very brittle and peeled, and I noticed my hair was getting thinner and super dry. At 33 after 7 months of no luck getting pregnant due to ovulation problems ( some times I would sometimes not) my endometriosis specialist put me on Clomid. I got pregnant with twins first try. During the pregnancy I felt somewhat better. My constipation was gone, my skin was no longer dry, my fatigue was less and my sleep a little better but I still had problems with unrefreshed sleep. I had complications at 28 weeks and had to go on a tributaline pump to prevent going into early labor as I was having contractions. It worked and I carried the twins to 37 weeks.
After their birth I dropped 38lbs in a month, I am not even kidding. I was breast feeding but the weight just flew off. I lost all of my pregnancy weight and 10lbs more. But the fatigue was insane, I assumed it was bing a mother of twins but after a routine blood test, I found out I was Epstein Bar positive and had Mono. It's been downhill since. It's been a year and a half and I am still so fatigued. My moods are so up and down mainly because I'm in so much pain and never wake feeling like I slept well. I have crazy occipital neuraligia. This deep aching spinal pain where my spinal cord meets my skull. Some days I can hardly handle it. I also have these horrible trigger points all over my upper back. My back and shoulder muscles make crackling sounds. My shoulders and neck hurt constantly. I never wake up refreshed even when I've had 9-10hours of sleep. I have developed joint pain ( mainly in my hands, knees and feet) and was diagnosed with fibromyalgia and TMJ. I finally saw an endocrinologist to get my thyroid checked. Everything came back normal except my thyroglobulin is high. An ultrasound revealed that my thyroid is slightly enlarged and has 3 very small nodules. I was deemed fine and told to come back in 6 months. But I don't feel fine. I'm exhausted to the point it's hard to keep my else open some days. The occipital neuralgia is relentless and on days when it's particularly bad, I feel so out of it I can't drive with out taking adderall. My short term memory is so bad there are days when I can't remember my friend's names or what I had for breakfast. I'm a stay at home mom, but I'm positive I would never be able to function in my old job and I feel like I only function now because I take 15mg of adderall to cope with the fog and fatigue.
Although my weight stabilized after I stopped breast feeding last year ( I actually gained back 5lbs ) I have a problem with bloat, particularly my face. My husband and family have started noticing I get this moonface look 1-2 times a month. It's very noticeable and sometimes my pants won't fit. It's usually when I'm having a real flare of symptoms. To me this sounds like a thyroid problem, maybe even Hashimotos?, but I was negative for antibodies. Just had high thyroglobulin and obviously my doctor wasn't too concerned or I would have heard more on this. I'm at a loss. I've also been tested for celiacs and even had a colonoscopy and negative. I was tested for allergies 5 years ago and negative. Anyone have any ideas?