I think I have fibro... I don't think my doctor is listening to me...

Hello everyone! I'm new here and I thought I could get some information or advice or something..

Anyways, so here is my story.

I have suffered from mental illness for a while but was finally being properly treated for it (Major Depressive Disorder and Generalized Anxiety Disorder) at age 18. I have been on many different antidepressants. I was diagnosed May 2012 with Bipolar II. I got on a mood stabilizer (Lamictal) and slowly tapered to 100mg. I was experiencing some of the worst pain in my life. I was practically bedridden. I was taking what I had, which was those migraine pills with a mix of pain reliever and caffeine, but that barely helped because of how severe my pain was. I contacted my doctor and we found out that myalgia is a side effect of Lamictal. I explained this to my psych and we agreed that it would be better to get off of it, as long as I'm not manic.

SO. I slowly tapered off of it, and....the pain was still there?

It is now two years later, and I am suffering from this pain. I am not bedridden, but it is hard to do daily tasks like cleaning up or doing laundry. I do one of those things and I feel absolutely spent.

Looking through various sites, I have a high suspicion that I may have fibro. Chronic pain (like many other things) runs through my family as well. My aunt has fibro, and I feel we have almost the same symptoms (though she can function better than I can, and hers was a cause from multiple accidents I believe).

I have also seen cases where Lamictal and fibro have been linked.

Going through the symptom list on the forums here from the Fibro 101 post, I find it amazing and sad that I have so many of them!

Now, I went to my primary doctor about my back pain a while ago. I told her I think I might have fibro. She poked me in the spots, over half of which hurt/was tender/etc. She told me to exercise, do these stretches she printed out and do a sleep study.

Well I'm kind of stubborn, and sleep apnea just didn't seem like an issue for me. So instead I saw my psych (a different one, since the one i had before left my hospital). She asked me about pain, and I told her I do feel pain daily and that I think its fibro but we are still figuring it out. Her next question was "...and you weren't given anything for it?" So she prescribed me Gabapentin 300mg/3xday. I slowly tapered since I'm sensitive to medications. I haven't noticed a huge difference in pain levels yet, BUT I can actually go to sleep within half an hour! Okay! Sleep issue solved!

I go back to my primary doctor with all this. It feels like her mind was wiped of all memories from our last visit... I can't blame her, I'm sure she sees lots of patients daily. So I tell her I'm still in pain, she asks me the same questions. Pokes me again. Everything hurts and or is tender. She says to lose weight and look into getting a breast reduction. She told me to start walking everyday for 20 minutes and increase to 1 hour... After I told her I can barely even do laundry or light cleaning... She gave me the option to use some prescribed pain med (though i forgot what it was called.) I declined because I JUST started 300mg/3xday of gabapentin and I want to see how that works out first once its in my system fully. Which I'm now regretting.

So that was last week! Today, I decided "I'll try this 20 minute walk..." I did my stretches and was already in immense pain. My fingers went achey and almost numb as well. She told me to push through the pain, so I said okay. Let's do this. I walked with my boyfriend around our neighborhood. I had to stop because of the burning sensation in my back. "Time?" "It's been four minutes, we should turn around if you are hurting." I hear my dr saying "Push through it!" in the back of my mind and I go for gold.

I made a 13 minute walk today but I immediately took some otc pain meds (which has done NOTHING) and I'm as stiff as a board now...

I am overweight and was overweight when my pain issues came around, but before that I was a very semi-active person! I wasn't someone who worked out everyday, but I would walk around downtown for hours and be able to have fun with my little sister without wanting to curl up and die!

I just don't know what to do. Do I talk to my doctor about how wrong I think she is? How I think I really have fibro? How I desperately need those pain meds? I don't know what to do anymore! I'm stuck and overwhelmed and stressed and sad and angry... I just can't take it anymore...

To end off, here are some symptoms I am having and have experienced since this whole thing started:

- Pain (duh) primarily in back (location changes day to day).
- Aches in limbs
- Hand cramps
- Charlie horses more frequently in legs
- Sudden nausea
- Headaches and Migraines frequently
- Sensitivity to sounds and pressure on body (sometimes clothes feel like too much!)
- frequent urination (ive done a urinary analysis, came out clear)
- pms cramps have been starting up again (ive been on birth control since i was 18, im 22 now)
- light headedness, hard to concentrate
- feeling too hot, then too cold (got my thyroid checked, that was also clear)
- semi-frequent heartburn
- weekly diarrhea
- depression, anxiety, mood swings worse
- tingling in fingers, mouth, calves
- fatigue (been a little better since starting gabapentin)
- muscle spasms/twitching (primary in legs, sometimes in back)
- scaly, itchy, slightly raised patch/rash close to elbow? (i heard rashes can occur in fibro too??) picture of rash --->i.imgur.com/reEmZ5i.jpg


NOTE: I forgot to mention that she did diagnose me with myofascial pain. But upon research I don't have a lot of myofascial pain specific symptoms (range of motion is very good, it just hurts like hell. she also checked my range of motion after poking me a bunch of times and was impressed. she also mentioned that she thinks my upper back is myofascial, but that doesnt explain the rest of the pain...)

Post Edited (Lolita Pudding) : 5/5/2014 10:58:45 PM (GMT-6)

I have not seen or been told to see a rheumatologist.

I have taken an ESR test, and it came back normal.

HI, Lolita, and welcome! I think you need to see a good board certified Rheumatologist and be run through blood work and other testing. You see, there are other illnesses that have many of the same symptoms as fibro so those need to be ruled out first before a diagnosis of fibro is given. How you treat the other illnesses is different than how you treat fibro.

By the way, some doctors think that fibro and myofacial pain syndrome are actually the same illness. When I get massages my massage therapist works on the fascia and it does help me. GENTLE massages by the way.

It's frustrating when you are searching for answers so that's why it's extremely important to have a doctor that understand fibro as much as possible and will have suggestions to help you. Losing weight does help a little. I did lose 85 pounds but I'm still in pain. Being overweight and having large breasts isn't causing this pain. AND she should have remembered you. It should have been all in your charts! All of my doctors remember me and my health problems. Remember, 50% of the doctors graduated in the lower half of their class. Do your homework when chosing a doctor.

Walking is good for fibro but you have to start out slowly. When I started walking I only could go four houses down before I had to turn around and head back if I was going to make it back home! That was an eye-opener but I didn't quit. The next day I went out and walked those four houses and came back and it was easier. The day after that I went a little further. You haven't been using those muscles and now you are demanding them to work like they did before you became ill. I now walk at least a half an hour a day. So take it slowly. Remember....slowly but surely wins the race.

I use ibuprofen with food, Tylenol, magnesium malate, vitamin D3, and a muscle relaxer called Robaxin to help with my pain and fatigue. I know you said you tried over the counter pain meds and when I first tried them they didn't work for me either. Then my doctor told me to take 600 mg of ibuprofen (three tablets) instead of the recommended 400 mg and that made a huge difference for me. I take them as needed and never more than four times a day.

Be sure to read Fibro 101...the first thread on the forum. There are links about fibro and you will learn a lot there. Good starting links would be What Else Could It Be and A Thorough Explanation of Fibromyalgia. There is also an interview with one of the top doctors studying this illness and links to the supplements I mentioned above and how they work in your body. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

I can just see your doctors eyebrows going up now, and frowning, lol