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Living With Fibromyalgia - Online Support Group

Hi, I'm Bebe

Hello everyone. I’m here because my doctor thinks I might have fibromyalgia, but she doesn’t sound positive. I think she’s diagnosing me with fibro because she doesn’t know what else to suggest. Maybe you all could give me some perspective.

I’m 32 years old and in generally good health. Two years ago I had a bad bronchitis that put me in the hospital. While I was there getting nebulizer treatments, I developed this completely debilitating leg pain. I worried that I had a blood clot, but they ran a bunch of tests and there seemed to be nothing physically wrong with me. The doctor decided I was faking my pain to try to get opiods, which was totally wrong-- I’ve always avoided pain meds. If I ask for pain meds, it means my pain is at a 7, not a 3. But this doc decided I was an addict, told my husband I was faking it, and discharged me. I went into the hospital unable to breathe… I came out unable to walk.

Over the next month or so the pain gradually got better, and I went back to my life. There was no diagnosis. No one had any idea what had happened to me. But now, the pain keeps coming back. I’m able to walk, but my legs feel awful. I have muscle weakness and chronic fatigue, and there are some parts of my body that are super sensitive to touch: I can’t get massages, my physical therapist pushing on my triceps is really painful, and even just my 5 year old climbing on me is sometimes excruciating.

I’m currently in a flare up, so I went to a new doctor to see if we could try to figure out what the heck is wrong with me. I have a family history of autoimmune diseases and genetic markers for autoimmune disease, but my immune markers aren’t elevated right now. She checked me for a lot of viruses, and the only antibodies I was positive for was Epstein-Barr (mononucleosis). So she suggested fibromyalgia and put me on cymbalta, which is making me crazy nauseous but I’m hoping that’ll subside if I can just push through and try to tolerate it for a while.

Meanwhile, I’m a PhD student and I’m so fatigued and in so much pain that I’m not really able to function. It’s been suggested that, if I can’t get my academic timeline back on track, I might need to leave the grad program. I could take a medical leave of absence, but I would loose my student stipend and my family depends on that money. Health insurance would also be an issue. So I kinda need to keep powering through, but it’s so hard. I’m in a scientific field, and the research keeps me on my feet all day. It hurts so bad and it’s so overwhelming to get anything done. I just want to collapse and go to sleep. I’m so fatigued.

I’ll be okay for a while, and then it seems to come back over and over. Things that trigger it seem to be stress, travel, and minor illnesses like colds. Unfortunately, stress and travel are a big part of my life at the moment, and can’t be eliminated unless I give up school. I have to present at conferences, and being a grad student is just inherently stressful. Plus, I’m a mom for a 5 year old with autism. He’s a lot of work, and it’s not optional. I don’t get to take a break from that.

So I’m just struggling a lot right now, and trying to figure out if this is ever gonna get any better or if we’ll ever really know for sure if fibro is the right diagnosis, or just the one we went with because we didn’t know what else to call it.

Thanks for letting me join you guys.

Welcome Bebe and thank you for sharing your journey.You sound extra busy with school and a little one with autism. I hope you are able to get some definitive answers so that you can more easily complete your PhD and enjoy your life with your family!

If your doctor has not and you have adequate insurance, I would recommend requesting referrals to both neurology and rheumatology. My local neurologist was not able to make a definitive diagnosis so he referred me to both Mayo and Cleveland Clinics. By a miracle, Cleveland was able to see me within 2 weeks so elected not to wait 6+ months for Mayo. At Cleveland Clinic, I was there 2 days getting all the tests and visits done at one time and was sent home with a fibromyalgia diagnosis after 22 other conditions were ruled out. I have one other condition that confounded the diagnosis that required a neuro-ophthalmologist to diagnosis and develop treatment the complemented the fibro treatment.

Once you have a definitive diagnosis, you can build from there. You may or may not have fibromyalgia. You have too much going on with your life to have an incorrect diagnosis and treatment plan.

Keep us updated on your journey. You are in my thoughts and prayers.
Dr. Norma Teresa

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Thanks for the advice. I live pretty close to University of Pennsylvania, so maybe I could get a referral there. I have another appointment with my doctor in a month, and I’ll ask then.

She called me on the phone yesterday to tell me that pretty much all of my labs were negative, and we discussed treatment a little. Her idea was to just try stuff and see what works. That’s frustrating to me. It feels like throwing spaghetti at the wall and hoping something sticks, and then letting that determine the diagnosis. I’m a scientist and that’s not how I like to roll. But maybe that’s just how this is done… I don’t know if there definitive biomarkers for fibro or not, or even what else this could be that we haven’t ruled out yet.

Honestly, the thought of going to a bunch of doctors and having a bunch more tests done is exhausting. It took a massive amount of motivation to get myself to the lab for bloodwork. Getting to PT twice a week is overwhelming. Making dinner requires a nap.

This stuff shouldn’t be so hard. I can drive. I can pay my copays. I’m lucky in so many ways. I just can’t get out of my freaking bed.

Bebe, you can get better…

Please read up on fibro and alternative medicines recommendations…i read a health newsletter…decades ago that recommended corvalen m was the original in studies, now there are generics… this dribose with magnesium and malis acid …helps at the cellular level to increase the energy of your cells engine…by increasing ATP…you need to learn self help measures like acupressure points…when i get overwhelmed laying on an acupressure mat helps …

My muscles could not stand a tens unit, but an alternative dr… recommended a microcurrent unit…i calm down and breathe totally differently within minutes and use it especially when the weather is making me flare…

Have they checked your vit d levels…guessing yes…

Just remember you can get better… i was worse in my 30’s than my fifties…drs can help some…but we also have to help ourselves…

For your legs , look up trigger point releases

LJ

Welcome Bebe
Meditation is wonderful for stress relief.
Sometimes it takes awhile to find the right combination
of exercise, medication, food and rest.
Always remember you are not alone.