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    Feeling out of options
    chrichie posted:
    Hi everyone. I feel a little lost and don't know what to do to improve my quality of life.

    I'm 38 years old and was diagnose with fibromyalgia about 7 years ago. In the beginning I was working full time and had insurance. It took a while but we found a treatment regiment that worked for a few years. When it stopped working as well I changed to Lyrica as part of my treatment and it really helped.

    Unfortunately, because of economic conditions where I live, the school district I was working for cut my job. I was able to get a new one but that was cut too. Eventually I was working part time with no insurance. I couldn't afford the Lyrica anymore or anything similar like gabapentin anymore. I couldn't even afford to go to the doctor so I started going only when at my wit's end. That's when things started really going downhill.

    For the last year and a half my doctor listens, then he shakes his head, says "I don't know what more I can do for you. You should try getting on disability." Then he sends me out the door with pain pills, a muscle relaxer, and two different antidepressants. He is adamant that I not try supplements because of some other meds I am on that react with a lot of things and are important (a blood thinner and a blood pressure med).

    I haven't been sleeping much. I sleep a couple hours at a time when my body can't stay awake anymore. I take over the counter sleeping pills. They don't help much. I try topical things. I have worn out several heating pads. I take baths with epsom salts and sometimes even crushed asperin in them. I try to exercise but have some trouble in that my feet are probably my worst area. I am seeing a counselor and a psychiatrist to deal with the stress and depression that seem to go hand in hand with the fibro for me.

    I simply don't have the energy, desire, or pain tolerance to do much of anything. I feel like I am failing my kids and my husband, not to mention myself. We don't qualify for medicare or state insurance.

    I don't feel like anyone understands. I am incredibly overwhelmed and don't know where to start. I have applied for disability with the help of an advocate and have been turned down once. We are appealing though.

    I know this is long winded, and I apologize for that. I am looking for anyone who understands and maybe some coping strategies or resources I haven't thought of.

    Thanks for listening.
    Dollbug responded:
    Hello and welcome.....MiMi in NC...sorry that you are not feeling sounds like you do have a lot on your plate....I am glad though that you have found this unique FM support it is always good when you can come here and "talk" to people who really understand and know what you are going through...

    I would like to encourage you to be sure and get your Vitamin D level checked....if you have NOT already done so....low Vitamin D can cause additional pain for a lot of people these days....and it can also affect other illnesses as well....speak to your doctor the next time you go and find out what he says about this....and in the your own research about Vitamin D....there are all sorts of good info on Vitamin D....

    I am sure that you will soon find things that will help you cope better....but it does take time....have you tried Stopain might want to check on this at walmart...or wherever you shop....(it is just under $8) ....

    I would also encourage you to try some lavender bath salts right before help relax your body....sleep is so very important for us FMers....and lack of sleep does cause us FMers....extra pain....and if you do not feel like taking a shower or bath at night....try to at least soak your does help me...

    I am one of the FMers who has learned how to "control my FM pain" by taking vitamins and supplements and doing other things as I can not help you there....since your doctor does not want you to take any supplements....

    You must also remember that what helps one may or may not help another.....only you will know when you find something that helps you...

    I would also encourage you to do some gentle stretching each and every day....we FMers...must continue to that our muscles do not very important...I do not know what you like to do...but walking or swimming is good for our body....just do not overdo anything....we FMers...have to learn how to pace, pace and pace.....on whatever is going on....

    We FMers also must learn how to limit stress....stress is the best friend of the wrath of the dragon...aka FM....

    I hope that you will soon find something that will help you cope we all know how you feel....

    Take care and good luck....

    IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA.... My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    xperky responded:
    It sounds like you are one of many in the middle who are falling through our medical care "cracks."

    I know what you mean about your feet getting in the way of exercise. I thought MiMi's idea of soaking them was one I might try.

    Tonight I have my foot on a hot bean bag I made. It helps me when I'm sitting. I took a cheap tube sock, filled it with dry pinto beans (about 2 lbs), and tied the end with heavy duty thread. It takes my old microwave 3-3.5 minutes to get it nice and hot. I put it on a folded up soft microfiber blanky on the floor. The same method works on my neck when it's tight.

    Another way to feel better is to learn meditation. It really reduces stress. Usually when in a bad situation I can snap my brain out of building stress by remembering how it feels to meditate.

    If your eyes are OK, try taking up reading before bedtime. I find it so relaxing to lose myself in a good scifi or fantasy novel. A good book will pop into my mind during the day and help me get away from the pain/stress/depression.

    It's horrible to feel overwhelmed. I've been there many times! Try not to expect too much of yourself. You are ill, afterall. I hope you start feeling better soon.
    Life is wonderful when lived with love and compassion, Margaret
    fitzgift responded:
    Hi I can relate to what you are going through since I have had fibro for more then 15 years. I was on Lyrica but it is to expensive and there is no generic form . I do take supplements there are no side effects ,even if you are on blood thinners you can take Boswella it is a herb for pain acts like Celebrex without the side effects 3 a day. I take minerals nore then the what the RDA says. Calcium,magnesium,potassium are very important for your body . I drink the minerals , get a good mineral drink like Pellagrino,Crystal Geyser,ther are 2 don't get the one that has more words on it I cant think of hand but you only want Crystal Geyser ,you can go online and research these. Go to Boswella .com also.
    Light aerobics are extremely important I do these in the water it is easier on the joints. Get rest during the day when your body tells you to. Listen to your body. Also hot showers for the aches and pains,sometimes cold when you are swelling then warm.I also take Olive Leaf I found this to help me also. But the minerala are important.
    HOpe this helps. Fibro is a debillatating desease but you don't have to let it get you down. I know it is hard to do exercise but you need to do it every day start out slowlu anmd work up .I have the burny type and I use rubs on these areas,like tea tree oil helps,it smells butgoes away fast. Good luck There is no such word as can't.
    Booch007 responded:

    Man you need a hug. It is true that it sounds like you are in the middle class crack that I have seen too often with patients. Too much for help and not enough to survive.

    I don't have too much to add other then if you lean in I will reach out and ...Oooh can you feel the ((((((((hug))))))))

    I just want to say. When I am BAD...I can't sleep in bed. I heat my rice pak for my neck, heating pad on a timer for my back and i sleep in the recliner after meds. Now you are using OTC. Is that benadryl? Please add maybe Motrin there too if you can. I think I saw a blood thinner in your statement. Coumadin (no Motrin) Plavix (motrin is OK).....but check with the MD. Benadryl and the motrin might take the edge off and staying more upright keeps you off your tender/trigger points.

    Try it, what can you lose....A large hammer to knock you out for a good nights sleep can just do wonders to reset your thinking too.

    And also by the way, we all feel useless at some point. BUT...think of "It's a good life" You need to watch that movie and have a good cry, meet an angel and realise how valuable you are.

    We are not the sum of the chores we do or can accomplish. We are valuable because we have wisdom, a heart, hands to hold those you love, a Mom's smile to warm a moment when they need support. YOU give so much I am sure.

    Just watch that movie, go rent it......and we'll talk again.

    OK, try the recliner, make a bean sak unless you have one. and get in a good place. A shower/bath..great favorite PJ's. A great dessert...the benadryl taken with milk (for the aid of sleep too) and motrin for the pain edge.

    I think the sandman is coming!! Hugs, Nancy B
    jrae922 responded:
    Hi there,

    You have been given some great advice and I can't think of anything more to add but I wanted to say that you are NOT failing your kids. You will always be their mother - you carried them in your womb and gave them life. There is nothing that can touch that.

    I really hope you feel better soon, and find some hope.


    chrichie replied to Dollbug's response:

    Thank you for your kind words and encouragement. I can't express the relief I feel to even know that there is another person out there who gets it. It's been a long time since I felt that.

    I'm definately going to try the Vitamin D check. After some research I have discovered that there is no evidence that Vitamin D will cause any problems with any of my other medications. :)

    I haven't tried the Stop Pain spray yet. I use a lot of dfferent sprays and rubs but haven't tried that one yet. I'll look into it next time I am at Walmart.

    I know the stress is a big deal. I try to limit it. I have a lot of difficulty doing that. My grandparents (on my dad's side) and my dad have/had a lot of trouble controlling their stress too. I am taking some meds for it and I think they help some just not enough yet. Though I think if I can get the sleep thing under better control that will work better than any medication ever will when it comes to lowering my stress.

    Thank you again for your kind words, caring, and compassion. I appreciate it more than I can express.

    chrichie replied to xperky's response:

    Thanks for responding. It helps so much to know there is someone who cares out there. :)

    I am definately going to try soaking my feet. I am not sure why I never thought about doing that. A lot of the time I put topical stuff on them or wrap a heating pad around them but I think soaking them may be even better.

    I am going to make a couple of those bean bag socks and see if they help. My brother has something similar he uses for his back so I'm sure it will.

    Thank you again, especially for reminding me that I am ill. That's one of the hardest things for me. I constantly compare myself to moms that aren't and I need to quit doing that.

    Your help is appreciated, and if I can return your kindess please let me know.

    chrichie replied to Booch007's response:

    You are so right. I really did need that hug. The middle class crack is definately where we are. We also live in one of those beautiful towns that costs more than it should to live in. I do use benedryl sometimes. I also use unisom. The blood thinner unfortunately is coumadin which makes it rough in terms of using OTC stuff. I am going to try staying more upright. Maybe sleeping in my recliner when it's bad or using extra pillows.

    Haven't had a chance to rent the movie but will soon. I am getting one daughter ready for a month long trip out of state to stay with some of my family. I am playing chauffer to the other who is in tryouts for one soccer team, playing for another, and taking a class to be a referee. There are only a couple more tryout dates and class dates so I will thankfully be done with that soon. I am planning a whole relaxation week with one of my sisters as soon as that is done.

    Thanks again Nancy. Your insights will help a lot, I'm sure.

    Take care,
    chrichie replied to fitzgift's response:

    Thanks for the suggestions. I really miss the relief I got from Lyrica and hope it comes down in price sometime soon.

    I will try the mineral drinks. I think most of those are ok with the other medications I am on. I am also going to check out the website.

    I hadn't heard of tea tree oil but I will look into that too. I use a lot of rubs which help to varying degrees. I'm hopeful I will figure out the right combination to get me where I need to be.

    My mom and I signed up today to take a beginners water aerobic class. She has rhuematoid arthritis and says it has been helpful to her. Wish me luck with that...

    Thanks again,
    chrichie replied to jrae922's response:
    Thank you Jessie for the reminder and the hugs too. It does help to be reminded of that.

    Take care,

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