untouchableme

Hi everyone,

I haven't been officially diagnosed w/ The Beast yet, I was given a tentative diagnosis by an anesthesiologist and referred to a DO at a local rehabilitation hospital that specializes in the treatment of FM and chronic pain. (My appt. is 12/7) I don't know if I have FM, but as my symptoms are right on target, I thought I would share what I've been using that seems to help a little. I would love if any of you would do the same. Thanks!

Rx meds:
Voltaren Gel: A topical preparation containing an NSAID. Helps me w/ the "burning skin" feeling, but I have to use it pretty frequently. Doesn't really touch the muscle pain much. (given to me by a friend, she used to get it OTC in Germany. Dr. is okay w. that)
Lidoderm Patch: Also helps w/ burning and takes a little edge off my muscle and joint pain. I have to use surgical tape to keep them in place and that irritates my skin but it's worth the trade-off for me.
Trazodone 50mg: Helps w/ my insomnia most nights and seems to keep my vivid dreams at bay. My bf says I still tend to stop breathing in my sleep however and pain can still wake me up.
Migranal Spray 4mg: Usually relieves my migraines either partially or completely. I like it because it doesn't seem to have side effects for me, but like any other mig. med you have to take it right away and it doesn't always work.
Maxalt 10mg: I switch this off w. the Migranal to try and prevent tolerance. It usually clears my headache but it does make me sleepy.
Hydrocodone-APAP 10mg (generic vicodin): Takes the edge off my pain, both muscle and burning but obviously has the side effects of drowsiness, nausea, and constipation (sorry if that's TMI). I do get concerned about tolerance with this as I would prefer not to end up taking 30 pills a day and in drug rehab. because of it. Currently I average about 3 - 3 1/2 pills a day when I'm really bad (which lately is all the time). That said, I wouldn't want to go off it without a good alternative. Dr is recommending Tramadol which I may switch to after my eval.
Effexor 150mg: Prescribed for my depression which I was diagnosed with years ago. Has some unpleasant side effects when you first start taking it, you have to ramp up and wean off otherwise it really messes with you. It does do the trick for me, much better than some other AD's I've been on. The funny thing is that since all of this body pain has really kicked in, I haven't had much trouble w/ my depression (?). So my mind and soul are doing okay but my body is KILLING me lol.
Alprazolam .5mg (generic xanax): Prescribed for me for anxiety, I take as needed, so not every day. My psych. originally had me on 1mg of Clonazapam, but it made me feel like a zombie so I asked for something else. Sometimes 1/2 will do the trick. Can help a little w/ pain. The biggest benefit I get from this is that it relaxes me enough so I can meditate.
Non-Rx meds: I don't get any benefit from OTC pain relievers so I don't take them anymore. I figure my liver and kidneys are some of the few areas in my body that are doing okay and I'd like to keep them that way. If I get a cold I generally don't take OTC cold or sinus medicines as they don't work well for me and I HATE how they make me feel. I do rinse my sinuses morning and night. I use a squeeze bottle as opposed to a netti pot - too much of a klutz for that. If I'm really congested and it's not moving I do break down and use Mucinex. side note - I've researched the Guai protocol and decided it's not for me. It's taken me years to find a skin care regime that works and I don't want to start over as it seems the benefit from GP is not much greater than other FM treatments I've researched. I know I'm not disciplined enough so I would just be setting myself up for failure and I don't need another hammer to my self-esteem.
Vitamins: I really suck at taking these, partly because eating, esp. in the AM is hard for me. Currently I only take a Multi-V, Fish Oil and a B-12 supplement. I plan to ask about vites. when I get my eval.
Foods: I try to stay away from artificial sweeteners as I've heard a lot of bad things about them (I do love my Fresca though ). I have trouble eating, food just doesn't appeal to me any more so I really listen to my body and eat what it tells me to. I drink a lot of Kiefir, "Green" drinks, i.e. Superfood, and healthy smoothies, not the ones w/ the HFCS and tons of sugar. Lean protein, vegetables (V-8 is great for when eating is too hard), eggs, cheese, ice cream (I seem to crave dairy but can't stand milk), rice both white and brown, soups and of course potato chips d I've cut down on my caffeine, usually just 1 - 2 cups of coffee in the AM or if I'm too nauseous for that I'll drink a coke or pepsi. I'm nauseated a lot so ginger-ale is a lifesaver for me.
Other: I wear a lumbar brace nearly all the time as instructed by my Doc. It's big, bulky, hot, plastic w. an air bulb dangling down, and I hate it as it's nearly impossible to cover (my HR Director says I need to so as not to freak out my co-workers),....but I have to admit it helps w/ my lower back pain. I have two herniated discs in my lower back and two in my neck. The lower back ones are causing severe stenosis down my left side and my left SI joint hurts terribly. It doesn't seem to help my hip, butt or leg pain though and I still have noodle leg(s) most of the time. Added bonus - my 11 yo daughter and her friends get a kick out of "pumping me up".
Exercise: Right now I'm not able to do much but can't wait for my eval. so they can get me on a program. I do know that when I'm able to, walking or in my case, lurching around outside in the fresh air feels great and I'm really bummed that it's going to be too cold soon (cold air feels like a match struck against my skin).
PT: I'm not currently in a PT program, pretty sure that will change with the eval. Previously I was getting electrical muscle stim. and ultrasound from my neuro's office but stopped because not only was it not helping, it wasn't being administered correctly and ended up making things worse.
Injections: Tried Lidocain injections in my neck once over the summer. Took 15 shots and it did absolutely nothing but I knew going into it that it doesn't help everyone. I think it made my neck hurt more for a while.



I have a lot of trouble regulating my body temp and would LOVE any tips to combat hot flashes and cold sweats. I'm not yet in menopause so HRT is out and wouldn't be an option for me anyway due to family history of heart disease and breast cancer. Also any tips on relieving the nausea which I can't stand!!!

On a final note, I love ironic humor so I thought I'd share this w/ you. Reading the boards and other sites, a lot of FM patients describe how they feel as being "hit by a truck". In 2006, I actually was hit by a truck!! Stopped in rush-hour traffic on the highway, been sitting about a min. Next thing I know my face feels like it's on fire, there's some kind of smoke/dust swirling around me and I can't breathe, my body feels like it's been body-slammed by Mark Henry (my daughter LOVES WWE), and some guy is screaming at me through the window - "What happened!!" "WHERE DID ALL THE BLOOD COME FROM"!!! (I love that since it was the driver of the truck). I manage to turn my head and the front end of a tractor trailer is in my backseat I just have to laugh If nothing else, it makes for a pretty good story. Peace to all and thanks.