Mystery Diagnosis

Hi, I am totally new to this site. I am in that Mystery Diagnosis stage that so many of you know all too well. My problems began roughly 6 years ago with IBS symptoms that got increasingly out of control. From dinner dates with my then boyfriend, now husband, where i would be racing to the bathroom to make it in time, to going 5-6 days unable to go and at the point of vomiting. My libido tanked.

Then something strange happened one night after a workout session with a personal trainer at the gym. When leaving the gym I started to walk down the stairs and found myself so fatigued and weak I had to stop and sit on the stairs. Thinking I was just out of shape, I tried to get up again after 5 minutes and again found it almost hard to walk with out grasping the railing. I slowly managed to walk out of the gym and get in a cab but I felt like a bus hit me. The exhaustion was unbelievable and lasted for weeks. I'd never experienced anything like it. I was a person that before all of this went to the gym 5 days a week for at least an hour. The fatigue and aches began to get steadily worse, mostly it was my neck and upper back so I kept thinking it was my mattress.

A few months later after pain that landed me in the hospital and the discovery of a nasty chocolate cyst I was diagnosed with stage 4 endometriosis. Surgery for it uncovered 3 apple sized fibroids too. After the surgery, I thought my problems would be over. It was all
the result of the endo I figured. But almost immediately after the fatigue and pain came back with a vengeance. 

My husband I desperately wanted a baby but with the endo it was anyone's guess. After trying without success on our own I was put on Clomid and to my surprise got pregnant with twins. Immediately, aside from the intense nausea, my IBS symptoms were gone. It was like, wow the old me, full of energy, not very sore. My skin changed too and I no longer had dry flakey skin on my nose that had plagued me for years. The pregnancy went well for a high-risk pregnancy, I did have early contractions at 28 weeks but got those babies to a healthy 37 week delivery. I had a cesarean and i seemed to heal very well and quickly but since I was getting up with twins 4-5 times a night  I was totally exhausted. So when I started taking naps etc whenever I could and feeling super tired and achey I figured it was just being a new mom of twins. Then I started noticing my lymph nodes were swollen, even the ones in my groin. I began to get what looked like ulcers around my bikini line and below. 1 and then a few days later another. It totally freaked me out...one of the things they test you for when you're pregnant is genital herpes because you can pass it to your newborn through a vaginal birth. I was negative.What the hell was this? I began to get fevers and night sweats so at my 3 month post delivery check in they did some blood work and it showed I had a current Epstein Barr virus infection, or Mono. 36 years old and mono? 

Well here I am almost a year later and the pain is unbearable some days...mostly it's my upper back ( tender points ) neck and horrible intense occipital neuralgia that puts me in such a fog I am afraid to drive sometimes. I have arthritis now in my feet, hands and wrists. Usually, it's very bad in the mornings and at night. For years I would wake up multiple times in the night and always unrefreshed in the mornings no matter how much sleep I got. I haven't seen a sore down there since but I do sometimes get these crazy deep ulcer-like scarring pimples every 4-5 months, usually in the same area on my face around my period. Sometimes they never surface but ooh do they hurt. My periods are still crazy heavy, painful and emotional but I just assume it's my endo. I have zero libido, nadda none and it sucks.

I am seeing a rheumatologist. Ive also had low vitamin D going back 6 years. It went up after taking prescription huge doses of it for a month but then dropped back down again. My blood tests seem fine, was not positive for Celiacs, Thyroid seems fine. My Ebv numbers are still super high, but aside from a moderately low 
platelet count, nothing too remarkable to report. My rheumy wants to put me on savella. I can't handle the fatigue and pain with twin 1year olds so I'm gonna try it. I know there's something autoimmune happening here though because after a 6 day dose of steroids I felt amazing. however when we tried them again 2 months later it didn't work as well. This is nothing new to anyone on this board...I know...but I still can't believe that I may never know what's wrong with me. I have become obsessed with trying to put my puzzle pieces together. hoping something will stand out. I refuse to be a victim but I won't be treated like a head case either. 

For now, I rule out...I get tests to rule out things, an extensive Lymes test, negative. Seeing an endocrinologist to get extensive tests on my thyroid, adrenals, hormones? Rule it out I say to myself. Next a colonoscopy and an endoscopy to rule out malabsorption issues. I will then even consider seeing an infectious disease specialist. Is there any specific test or doctor I haven't mentioned that I should consider? I was tested for lupus and was negative.

Sorry this was a novel, feels good to finally talk about it. So tired of being " strong" for my husband and kids when everyday is a struggle to do anything. I want my girls to have an energetic mom, my husband to have a wife with a libido at the very least...is this too much to ask in life? I'll deal with the arthritis but I can't be so fogged out I'm running red lights in a car with my kids. Hopefully savella can at least help with that.

Advice welcome.


Sent from my iPad

Hi Redheadbk,

Welcome to the HealingWell Fibromyalgia forum. I love to put capital letters because it looks so important. lol...

I am so glad that you joined us. After they rule everything else out, generally they do a tenderpoint test. Have you had that yet? The press on certain areas of your body to see if you have pain. This still can be a false reading, some days they hurt, some days they don't. It can be very frustrating to get a diagnosis.

It does sound like you have it though. If I were you, I would check out the thread titled 'fibro101'. There is a wealth of information there. There are similar illnesses that fibro can be mistaken for and there is a list of fibro symptoms. And there are many, believe me.

I hope that you get to the bottom of things. Pace yourself to keep enough energy for the twins. I am sure that they are a handful and more. But these are prescious moments as I am sure that you already know.

Keep posting and know that everybody here really does care about eachother.

Have a wonderful day.

Hugs, Karen

Readhead,

Hello! I'm also a redhead, btw. It sounds like you've found a great doctor, and that's half the battle, in my opinion. Sorry you're having so much pain.

Debbie

Hi I thought I'd give you all an update: I've been taking 25mg of Savella and 10mg of Adderall once a day. The Adderall has been pretty good at keeping more alert ( surprise surprise) I still feel spacey and unfortunately it does almost nothing for my short term memory loss. Wow...can we just talk about that for a minute. It's getting so bad, I continue to be amazed that this is happening to me. It's so difficult for me to retain anything, names, numbers appt dates. If it's not in my phone asap and with a reminder, I will forget it. Makes me wonder what is specifically causing this, what's happening to my brain. I continue to be so frustrated by the lack of information out there. There's seems to be no real agreement on how/why Fibro or Chronic Fatigue occurs let alone how to successfully treat it. I can't help but wonder what physically is going on in my body and what will the long term effects of this end up being? Sorry I digress...back to Savella.

Well the good news is, I really didn't have any major side effects. Basically the beginning for me was not pleasant but not horrible either...how much food and how hydrated you are make a huge difference in the level of symptoms and discomfort you feel, along with how fast and how much you take in my experience. I found if you don't take it after a fair amount to eat, you will feel a bit nauseous and you will get a headache. I went extremely slow and I never went up to the drug's 200mg desired amount. I will be increasing my dose though to 25mg mornings and 15mg afternoons for a total of 40mgs a day. So far, it helps a little but not enough. Personally I want something that will make me feel halfway normal again for at least 75% of the time. Whether it means I need a higher dosage or something else I don't know yet.