I was diagnosed about 3 years ago. I had ever test and saw every Dr that my Dr thought that I should see. So, I quit him and found another dr who started me on EffexorXR 3x day, Abilify once a day, finally a thyroid med for hypothyroidism. Then I asked to be referred to a pain management Dr. He started me on Kadian 100mg 2x daily (slow release morphine) we tried several different muscle relaxers, but they all had the opposite effect. Then for my breakthru pain I take Actiq 1200mcg as needed. I also take xanax to sleep. Most of the time I am doing ok, but right now I am having a horrible flare. Unfortunately my husband just thinks i'm crazy. So today I am doing laundry and dishes. I think I am going to take a quick nap maybe I'll get to feeling better.
For those of you who might not know what that is -- it is where you figure out what you can and can't do or how long you can do it for, etc. to minimize pain.
So, probably you all do that. You just might not have known it was called ergonomics!
Now you do.
And of course, I sleep, try to eat healthy, exercize quite lightly, stretch, and take a few medications for specific things related to the fibro . . . no pain meds though or any other meds because my mom doesn't think it's the best idea . . .
Mitral Valve Prolapse
High Blood Pressure
Solar Urticaria (but not officially yet)
I take a sleeping pill, muscle relaxer, and of course keep my thyroid (hypo) in check. I also take prednisone for joint problems (connective tissue disease - possible lupus). Other than that I exercise and of course I come to this board and talk with lots of great people. Oh, and I forgot I take vitamins.
May I ask, was the Abilify rxd specfically for your fibro? That seems strange to me; definitely an off-label use & IMO, perhaps almost out of the ballpark. What aspect of your fibro is it helpful for?
Rx hormone supplements are impt for helping to keep my fibro at bay: I use bioidentical compounded Rx estrogen & testosterone. Also use thyroid hormone meds -- they help my pain & activity/ability level a great deal. My other Rx is a topical NSAID, very potent, which I use on rare occasions.
Other than that, I use vitamins, minerals, amino acids, & EPA concentrate fish oil, which helps both pain & low mood.
I have found that fluoride & chlorine are flare triggers for me, so I avoid them.
I do best with regular daily exercise. I walk and do range of motion / stretching. It's all very gentle, slow exercise, but things do go downhill if I miss several days in a row. When my flares are severe enough that I need to use my walker, I just do the stretching, usually under a warm shower or in a warm tub w/Epsom Salts & MSM added to the water.
I use assistive devices (cane, walker, raised toilet seat, reacher/grabber tool) as needed. When in the midst of a flare, these tools enable me to heal & prevent further pain.
My favorite comfort measure for pain is a microwaveable moist-heat pad that penetrates very quickly & can be easily moved around my body. I also use a hand-held shiatsu-type massager to take the edge off of painful areas. Not sure why it works; maybe gives the brain some other sensory input to process.
P.S. Sometimes in the morning I have to get my husband to pull my up to get out of bed, then I wobble around for about 45 minutes before I can stand up straight. The reason I am on such strong pain meds is because I have no tolerance for pain whatsoever, never have. I am only 34 if I havent mentioned!
I am not sure I always handle it!!!LOL
I try to stay active, although somedays that is only a few simple things...getting up to let the dogs out, a load of laundry ( on the main floor of the house) and some dishes and dinner making. I take vitamins and fish oil, I think both help keep my body healthy, and I take vicoden for pain. Most days I have enough pain to warrant the pain meds.
I feel like I end up "pretending" all the time....that most things I do, even simply walking across the house to use the bathroom...are full of effort and use energy that I don't always have! For me fibro has become a daily task of overcoming how bad I feel to have some sort of normalcy. It is a wearing task...and after almost 4 years post dx, it is wearing on my mental health a lot of days.
My goal this summer is to try to get more active...as so many folks say that exercise helps! Well, we just moved from WI to KY..and we have put in a swimming pool. My intent is to get into the pool, and move around..starting slowly of course...but maybe by the end of the hot weather....I will feel better????Crossing fingers that is the outcome!
What are your lupus / connective tissue symptoms. How do you tell the difference between those and the fibro. Some of my doctors think I may also have the beginning of a conn. tissue disease also, specifically scleroderma. I never know which one causes what pain?
I was diagnosed in Sept '04 after suffering for years not knowing what was wrong with me. The symptoms never all appeared together, just separately. Once they all piled on me at once I looked into what could be causing it. My family doctor, who is fabulous, and I both agreed with the fibro diagnosis. I also saw a neurologist because of migraines and light sensitivity. She put me on Elavil which helped with pain but knocked me out for half the day.
Now I'm finally on something that works. I take Nortriptyline 50mg in the morning and .25 mg of klonopin twice a day in addition to my Tegretol for my epilepsy. I also take my multivitamin and additional folic acid. I try to eat healthy, aside from the chocolate LOL and get enough rest. When I'm doing things around the house I make sure to take breaks otherwise I get very tired. Not as much as before since I've been excercising. I'm training right now to walk a half marathon (13.1 miles) and raising money with Team in Training through the Leukemia and Lymphoma Society. I can't even begin to tell you how much this has helped me. Its been really hard but its had a tremendous impact on my ability to do normal things with my son (4 yrs old). I have days though where I just can't get going and those are usually days before my cycle starts. The other thing that bothers me on a daily basis is the feeling right under my skin when someone touches me, even softly, like i have a burn. It hurts so bad and my lil guy still doesn't understand that he can't rough house with me.
When I flare, I listen to my body and only do as much as I can and I've learned to let the rest go. My husband helps me during those times even though he works full time. My biggest issues are fatigue and anxiety, esp when driving. If I can get those even more in check I'll be doing pretty good. I can't even begin to tell you how far I've come in less than two years...from not being able to do a thing other than the bare minimum for my son to training for a half marathon.
I was diagnosed with Fibro two years ago after feeling awful (pain, no energy, brain fog, panic attacks) for three years before that.
I can honestly say that I'm not "handling" my fibro very well yet. I think I'm still in the "denial" stage because I keep looking for other reasons (and cures) for my pain, brain fog and exhaustion. While I'm looking, I'm taking diclofenac and elavil for my pain, trazodone to help me sleep, plus other vitamins and minerals. I also take levothyroxine for an underactive thyroid and Premarin because I had a hysterectomy ten years ago. I've thought of going off the Premarin, but have read so many different view points on the interaction of fibro and estrogen.
My doctor has prescribed flexeril and ambien as needed, but I find they just make my fatigue worse. All in all, I'm worse now than I was when I was first diagnosed. I think I'm severely sleep deprived which makes all the other symptoms worse. I don't know what to do about that.