Making Progress

by on March 29, 2013

Fibromyalgia is such an up and down roller coaster. Sometimes it seems like nothing goes right and things that were making sense are suddenly all out of whack again, and then at other times its like some crazy complicated scheme has all come together.

We have had both over the past couple of months. Healing from the spinal disc fusion surgery that Michele had last October should mostly be complete by now (we hope). Back in mid January, Michele experienced a very sudden and sharp increase in pain associated with her upper neck, above where the fusion was done. It was weird. She described the pain as being like something hard had come loose from where the surgery was done and was floating around behind her throat rubbing on various important parts of her anatomy. Headaches were bad and pain once again radiated down her arm causing really bad weakness.

So it was off to the surgeon and then to a fresh MRI to see what was going on. Oh joy of joys… another $800 for a test that yet again showed nothing conclusive except that nothing from the surgery had fallen apart and everything looked fine.

As mysteriously as the strange neck pain arrived… it vanished. Sometimes Fibro is like a thief who sneaks into your house and steals money from your wallet. I hate that!

In this case at least, we have one good hypothesis as to what may have caused the pain (of course we do… we track everything!). Michele had 2 sleep studies conducted in December and they resulted in a CPAP breather machine that she is supposed to use when she sleeps. The mask that she wore (which made her look sort of like Darth Vader) had a strap that went across the back of her upper neck. Perhaps the strap was leading to the pain?

So we swapped out the mask for a different one that does not have straps and instead goes into the nostrils. Now she just looks like an alien when wearing it. Its ok – Vader or not, I know she is strong with the Dark Side of The Force.   ;)

The change in CPAP machine mask helped her neck pain as shortly after the swap the pain began to improve. It is not totally gone, but it is nowhere near as bad as it was in mid January!

The CPAP machine took some getting used too, but Michele is now sleeping between 7 and 8 hours per night using it. Her fatigue is much improved, so much so that she has started back with dance exercise! When I married Michele she was an aerobics instructor and loved dance exercise videos. Now she is working hard to get back into it and she has the energy to do it. I am really proud of her.

TramadolAfter over 10 years of taking Prozac her depression had increased and she was experiencing more severe emotional spikes. Those fun crying spells that come on for no reason at all. I really hate that. She has felt that the Prozac had been slowly diminishing in effectiveness over the past year and we investigated a number of other possible treatments to test instead of Prozac.

Michele’s neck pain and the pain she gets in her “spot” in the upper right side of her back still get to the point at times where she needs pain relief. The problem is that most “pain medications” really do not seem to work. She has tried oxycodone, hydrocodone and many other opioid combinations but their side effects are as bad as any pain they may relieve.

So she decided to test Tramadol taken daily to see if perhaps this could work to address both issues. Tramadol is not typically prescribed for depression, but it does function to help regulate serotonin and norepinephrine. We had also read that for some patients it can be effective to reduce frequent pain.

So she has started taking Tramadol. She began with 50mg taken 4 times per day. We noticed that within a few days her sleep quality was getting worse. So she began to take it earlier in the day and that has helped. But a better solution was to try the time release version of Tramadol so now she is taking a single 200mg time release pill in the morning. So far – so good. Her pain is reduced and she is back to sleeping well though we are still tracking closely as this latest change was only last week.Tramadol Side Effects

Michele has made so much progress. I am really pleased. Her overall demeanor and mood (note – NOT all the time for sure!!!) is better, she has tons more energy, she is happy about exercising again and she is setting weight loss goals! I expect with the arrival of Spring and warmer weather things will get even better!

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{ 8 comments… read them below or add one }

Sharon Hayakawa March 30, 2013 at 2:50 pm

Not sure why tramadol is mentioned here, but the illustration is pretty good. I was given tramadol at one time, for pain, but it became useless and non effective within a short time. I should mention I have the red haired gene, which often causes things like that with medications. I’ve had fibro for years, but also have other (RA, OA, Degenerative joint and disc disease, etc.) so I often attributed many of my symptoms to those and not fibro. I’m glad to know more about it, it seems to be getting so much worse lately.

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Crystal March 31, 2013 at 5:18 pm

Honestly, none of the drugs given to me worked. Last year after researching & praying, we decided to try medical marijuana. It’s been my miracle. I went from 10 medications to two in three months & over a year later, still down to just two. Just wanted to share what worked for me.

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Tammy April 1, 2013 at 9:53 am

“Making Progress” is like reading my own story, at the beginning. I am although, not making progress. I don’t know what to do. I am happy for anyone who can make good progress by figuring out some reasons for why it was affecting her. I am on 60mg of paxil, 30mg buspar, 10mg oxycodone, as needed. I cannot take too many NSAIDS ie.(ibuprophen) as they disturb my gastritis, and that stinks cause I have muscle aches allover and frequent headaches, and migraines. I am lost as to what to do. But, when I go to bed I feel like I am not getting enough oxygen, I am a shallow breather because I have to take 2 tramadol, 1 muscle relaxer (xanaflex), and neurontin at bedtime. I cannot take the oxycodone past 5pm or it keeps me awake. I have 2 small children, and in bed half the time. Someone has to be home with me at all times in case I wake up ill feeing, or get that way during the day, which happens too often, leaving me to feel sad and have frequent crying spells all because of this crazy disease. Lost and frustrated.

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Amy Flores April 2, 2013 at 2:11 pm

Hi, I have been suffering from fibromyalgia since April 2012. My pain manager wanted me to endure physical therapy with no pain medication. However, after a few months I could not take it anymore. My rheumatologist prescribed Lyrica which didn’t work then Gabapentin. I tried Tramadol, & Gralise (gapabentin ER). I tried Nucynta which I still take along with 150mg twice a day of Lyrica. I also tried meds for Lupus and all kinds of other meds. I have found that Gabapentin and Lyrica helps a little and my pain remains between a 8-10 everyday. I till do my physical therapy so I don’t crap as much. Also to reduce the stiffness. I have horrible flares around my menstruel time and after working out. I sleep about 5-6 hours a day. I am still drowsy all day though. It is frustrating. My father did recommend one thing to me that my friends have tried DMSO (gel/cream/spray/or roll on) it does work. Check it out on Google. I did lose my job. I am fighting for social security disability. I also have degenerative discs in my neck.

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Amy Flores April 2, 2013 at 2:12 pm

Actually I have had it since Feb 2012 but diagnosed in April 2012…

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Shannon April 3, 2013 at 1:23 am

Yay on some good improvements for Michelle :)

I tried Tramadol and it worked for a while. Much better symptom wise than while on Oxycontin. Eventually Tramadol wasn’t enough for me at the highest suggested dose. I was then recommended Nucynta Controlled Release (200mg 2x per day) by my pharmacist. It has no side effects I can detect, but I suspect it really contributes to my fatigue. For most days my pain is managed pretty well now. More recently, I was prescribed 50mg x 2 per day of instant release Nucynta for breakthrough pain and this has made a decent difference for me. Pain isn’t gone, and I don’t expect that as it just isn’t realistic, but I’d say my pain is managed better.

So here’s to have better managed pain! Glad to hear Michelle is experiencing some improvements :)

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Barbara Fiedler April 3, 2013 at 9:39 pm

Honestly…I’ve been wondering if there is something I can take besides Tramadol! I’ve been on it for almost 6 years and I don’t seem to be getting relief. Having said that, I haven’t tried not taking it either!! When I moved here, my new doc took me off oxy, which I totally understand. But that is the only drug I’ve ever taken that actually worked! (The previous paid person was a PA who gave me anything and EVERYTHING!) Morphine didn’t work. Some of the stuff he gave me scared the daylights out of me! I’ve been given Vicodin, but it really doesn’t work for me unless I take two, and two makes me itch too much to sleep! So what’s left??

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Sandra Cortez April 4, 2013 at 5:13 am

I was taking tramadol for over five years but my immune system got immune to it besides the other medications I was taking so I stopped. I’m now taking lyrica for a week now and it’s like taking a aspirin. I’ll get it another week see what happens. I need some relief with this pain we endure. Hope they find a cure for us. Love & soft Hugs!

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