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    Don't Understand
    Troncey1 posted:
    I have a read a few helpful posts here so thought I would try it out myself!
    I will try to make this brief...
    9 months ago I was diagnosed with having fibromyalgia, I was given amtitrypilene (sp) to try, had bad for several months I tried accupunture and massage therapy. I am now at my wits end! As well as the pain, I seem to have every other symptoms possible, i.e. dizziness, anxiety, sound sensitivity, numbness and tingling, food sensitivity, you name it! Sometimes I think I could just deal with the pain if it wasn't for everything else that goes along with it! In any regard, I tried Cymbalta, loved it! But it made my face and hands swell...
    I just tried a low dose of Savella, but it too made me swell. Oh, did I mention I also have chemical sensitivities. I just don't know what to do and I want my life back! Which brings me to I just don't understand this illness and how to get any relief or what to do!
    Thanks for listening...sorry for rambling. Not even sure this makes sense. Lol!
    dollbug responded:
    Hello Troncey and welcome....MiMi in NC....sorry that you are having to deal with so much....but I am sure you will soon find something that will help you cope does take a trial and error process....but you should keep on keeping on....until you find the right combination of tools that works for you...

    I would like to encourage you to be sure and ask your doctor to check your Vitamin D level....which is important to a lot of people these days...low Vitamin D can cause additional pain and it can also affect other illnesses as is a simple blood test...but YOU MUST ask the doctor to check this is not included in the normal bloodwork that the doctors do...

    I have learned how to "control my FM pain" by taking vitamins and supplements....but the chronic fatigue is just as bad as the pain....trying to deal with the wrath of the dragon, aka a challenge for most of it is also a vicious cycle...always one thing or another to deal with...

    I tried different medicines in the beginning but did not find any which helped me without causing other side effects and I felt like I did not need anything else to deal with...

    I hope you will check out the info under "tips" and "resources" that you will find to the right of this sure and read the *member toolbox* you will surely find something that you have not thought of trying...

    Having a positive attitude is a plus....and this is not always an easy thing for me to do...drinking plenty of water every day and watching what I eat and trying to stay on a schedule of sorts is also helpful...when I am extremely tired at night I take a hot shower right before I go to sleep and I use lavender bath salts in a stopped up drain....this helps my body to relax so that I can sleep better...Sleep is extremely important....and getting enough of it...gentle exercises and stretches is also important...(gentle being the word here)...

    I am not sure that *getting your life back* is a possible goal....learning how to manage it better might be a good start...I think we all have to eventually come to terms that we will never be our old self again...

    Learning how to pace,pace and pace even more is very important also...and taking one thing at a time...remember that it does takes a lot of time and effort to figure out how to stay in front of the wrath of the dragon...instead of *dragging the dragon* as Nana B says...

    Take care and good luck...


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    xperky responded:
    Hi Troncey1, and welcome.

    I like MiMi's sensible advice. There are many ways to feel better, thank goodness.

    I have a lot of the FM symptoms too. The list goes on. I try to treat each discomfort as it appears and keep on going. Pacing is one of the tricks I'm slow to learn, but it's so important.

    Good luck.
    With Compassion,
    Randm2220 responded:

    I understand where you are. The first year or so after being dx'd is tough. It is trial and error on the meds. Learning to cope with the other symptoms. Educating your family and friends. So much is going on in your mind it makes your head spin even more. You get frustrated and angry. You really do want your old life back. There are fits of tears, stress level high, frustration, fear and every emotion. Usually all in one day. Coming to terms takes time. Education is a big part of it. I have read everything under the sun and am always searching for more.

    Everyone says to be patient. Not an easy thing to do. Meek sure you have someone you can talk to and express your feelings without being judged. This person should be someone who can handle hearing you vent and express your pain everyday without getting tired of listening.

    I hope this information helps.

    Feel free to vent here. The people in this group are great about listening. There is another support group through that has a lot of caring people also. They helped me during my first year.

    Troncey1 replied to Randm2220's response:
    I appreciate the feedback and advise...I have been taking a Vitamin D supplement, just recently found out that was low. I am at a crossroads with this, while I do understand that I will never have back exactly the way life used to be I hate that I cannot make plans to do anything since I never know how I will feel until that day! I was always very active and social...and well, now I am not. Also, I have to young children and I want to do so many things with them!

    Sometimes I worry (probably too much!) that whatever pain and/or symptom I am having isn't related to the fibro, but perhaps something else...i.e. sharp stabbing pains in the chest, arm pain, face and hand numbness, but I am assured by my doc it is. Just drives me crazy! I appreciate the ability to vent, thank you!

    I don't know what else is out there for me to try...I go back to family doc on Thurs who says she will not give up, but I worry about what the next side effect of a med will be.

    People say to me I cannot imagine being in pain, I say I can deal with the pain, I cannot deal with all the rest!

    So many docs and so many doc bills...sometimes it doesn't seem worth it!

    Sorry, I am rambling again...thanks for listening though!
    ggladieux replied to Troncey1's response:
    Acceptance is a difficult challenge especially of this illness, but it is well worth the effort. It is a trial and error with different medicines, but you are blessed if you have a good doctor that actually listens to you and more importantly understands your fibromyalgia. Hang in there and don't give in or give up, I pray you have more good days than bad.

    Iwillfeelgood replied to Troncey1's response:
    Hi Troncey1. Welcome to our world. You are among friends here. You doctor is correct. You have gotten over a major hurdle in your new journey in finding a doctor that believes in you and is educated in treating fibro. What works best for me is eating a very clean diet: no red meat or pork, no processed meats, limited dairy and eggs, no gluten, no caffeine, limited sugar ( I use local honey), lots of fruit and veggies and nuts. Careful with the vitamin D. Too much can make you feel bad. I can't take it at all. It makes me feel jittery and weak. I do get as much sunshine as I can. At least 30 minutes each day on weekends. My meds are tramadol usually 50 mg in the morning and 50 in the evening. On my chores days, I take 100mg morning and evening. I also take a muscle relaxer Tizanidine about twice a week. I cut the tab into fourths and take only 1/4. It was recommended by my rheumatologist. A lot of my pain is due to the muscles feeling "seized". The tramadol can't be mixed with antidepressants and some other drugs and it is addictive even though they say it's not. If I miss two doses, my body goes into withdrawal and I feel like my insides are crawling. You have to get enough sleep. I found sleeping in a reclined position instead of flat helped tons. I was able to get the money for a tempupedic bed with a docs script out of my retirement without penalty. Still, a lot of the time, I just sleep on the couch (I have a great couch to sleep on ). A warm bath or shower and a good loofa scrubbing helps me rest. You'll not be a soccer mom running to several activities all week long. Find quiet things to do with the kids, coloring, playdoe, make popcorn with M&Ms and watch a movie, take a sandwich picnic to the park and let them run around and play while you watch from the blanket or folding chaise (my favorite), sit in the yard while they play outside. I got a small karoke machine. They love that. These are some of the things I do with my grandkids. I have quite a bit. Their mom had fibro too and doesn't cope effectively and won't get treatment. I do have to make them keep the toys in their room so I can just close the door till I'm up to cleaning. They help.. I also keep a basket in the living room so its easy to gather up anything they do drag out. You don't have to big energetic like amusement parks or long strolls through museums for them to feel your love. chores I do them in small bursts, 20 minutes cleaning, 20 minutes reclining. I can tell when I've had enough because I get very clumsy. I'll take a good hour rest or if it's late, I stop for the night. Speaking of cleaning, you have to become organized in a military sense. It will save you so much when it come to cleaning day. Everything in its put up place, take off shoes, put them in their closet. Use a glass, wash it an put it away, etc. Do one load of laundry at a time, wash, dry, fold and put away before starting the next. I also have a strong faith in God that makes it all easier to bear. Well, I'll sign off for now. Keep us posted on your status or just sign on and vent. We're here for you.
    treadingwell responded:
    Hi Troncey,

    Let me tell you that after 15 years of smell sensitivity, the migraines, the food sensitivity and everything else that comes with FM, I was ready to throw in the towel. But my mom has FM so as long as she pushes, I push. Hey, I can't let her show me up!!!! All kidding aside, my mom has been my best supporter in all of this and vise versa.

    Especially in the last five years, my stress level was all the way to the moon. The more stressed I got, the worse I felt, the more I lost interest in feeling better and just wanted the pain so I slept. My PCP gave me an option, I went on all the meds that made me feel worse or I changed my attitude and lifestyle.

    So, 15 different massage therapists later I found one that works on my body in a way that has me actually has me relaxing ten minutes into the massage. There are days that it's very painful but my massage therapist will do deep breathing exercises with me as she hits those trigger points. The pain isn't as bad and just concentrating on my breathing relaxes me as well.

    Each acupuncturist has their own technique especially the American ones. I found a board certified PhD from China who came to the US to start his own acupuncture practice. I've been with him over a year and I continue to "feel" results with him. Of course it took five months before I really noticed a difference. And when you have 30 to 85 needles going from the top of your head, down your neck, over your shoulder, in your lower back, behind both knees and sometimes in the back of your thighs, ankles, toes, and arms you do have a tendency to be a little overwhelmed but I do sleep well when he's done, the heat lamp goes on and the lights go out!!!!

    I alternative between the two so weeks 1 & 3 are acupuncture and weeks 2 & 4 are a full body, deep tissue massage with pressure points for 90 minutes. I also see a chiropractor at the beginning of every month and sometimes more depending on how hard I'm pushing my body.
    I now strength train for 30 minutes three times a week with a certified trainer that knows how the body works and has experience in training others with FM. When I say I'm having a bad day, he pushes just as much but with lighter weights and does more stretching. I also do 60 to 90 minutes of cardio five day s a week and take two days off to give my body a break. I've tried yoga but it did nothing for me. I think that it was the type of yoga that I was doing so I'm researching the styles.
    I tried the drugs "026 bad, bad, bad reactions! I do the supplements/herbs and I take my D every other day. It is hard to push the water but it does help. I cannot agree with Iwillfeelgood about clean eating. It does make such a difference and the other benefits that go with clean eating are a bonus (I've lost 5 dress sizes between changes in the diet and the exercise).
    Now that I found a routine, and it seems as though the pieces have fallen into place, my energy level is coming back up which is a shock to both me and my husband. I do take 30 minute naps when I get home from work and there are days like today where I feel like I can crawl back into bed but it's nice to know what I can go from 4:30 am to 12 Midnight when my job demands it.
    Keep trying things and don't give up on the alternative practices. When you have one thing that works, see what you can add to reinforce it and get you to another feel good level. The pieces will fall into place!!!!! And you're in the perfect place to ask for advice, get support and "scream" if you need to!!!!! WE'VE ALL BEEN THERE and are STILL there ... you do learn to live with FM but it's in the learning that you find how to live!!!!
    oceanmyst1262 responded:
    I have been reading these discussion boards for about 2 yrs now but just joined today. I can't find a medicine to work for me either. Have done the vit D and it swells my face and tongue. all of the antidepressants I have tried have caused the swelling in my face, throat and tongue. I have days that I just wanna give up. It gets tiring being so tired all the time and not being able to keep up with my boys. I am currently on xanax and flexorall. I sometimes think maybe I need a sleeping pill. Sorry I'm rambling. Has anyone else noticed when you get cold you're really really cold or if you're hot you're really really hot? Theres never a happy medium. I also have the sound sensitivities and chemical and food allergies. Thanks for listening.
    show46 responded:
    This is a condition that will test your limits and I have had to learn to take one day at a time. Stress will increase your pain so try at all cost to limit it. A support group will help some because you can listen to others with the same issues. Try the TENS Unit, that really helped me along with my medication, physical therapy, talk with your doctor about Gabapentin, swim in warm water if possible. Stretching on a daily basis is very important, it is uncomfortable but it makes a big difference. Soft music is very helpful to listen to when I go to bed at night. Massage has helped me also and soaking in epsom salt with baking soda after your soaking. I hope these suggestions will help you.
    Fibroreality responded:

    I have found that Ambien works best for me. I like amitrypilene too but I am still sleepy the next day (usually all day). It does take a while to figure out the right combination and it can be frustrating. Things will get better soon. Soft hugs.

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