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dorothy57

Fibromyalgia

Posted by @dorothy57 in Just Want to Talk, Nov 13, 2011

Does anyone
have this and if so do you experiences days of having major headaches, muscle aches, just flat down in bed. still working full time, but very hard. I was sick for 4 out of seven days las week!

Tags: Fibromyalgia

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phinze

Posted by @phinze, Nov 13, 2011

You have just described my last week. This is truly a crappy disease.

dmdouglass

Posted by @dmdouglass, Dec 12, 2011

I agree with you totally! Tried neurontin which very suprisingly eliminated like 90% of my aches and pains..however the side effects were to much for me to handle, felt like i had the flu...dizzy..yuck. Stopped taking sat. Thinking about taking tramadol, anyone take that for the lovely irritations of this syndrome?

dorothy57

Posted by @dorothy57, Dec 12, 2011

Couldn't take that at one time seemed way to strong, made me feel really out of it! We just came home from Florida after a vacation, what a difference compared to Michigan in how my aches and pains. Hurting so much more here!! Doing the heat a lot and hot showers since I have come home, can't really get by without my afternoon meds like I did in Florida. d
Does anyone have any feedback on living in Florida full-time? We are thinking on living there in the future if possible! Take care Dmdo glass, hope you find some kind of answer!! If you do please share!!

dmdouglass

Posted by @dmdouglass, Dec 12, 2011

Thanks dorothy! My sister in law just moved to lakeland florida, suprisingly into a mobile home park! I couldnt believe it. But ill tell you what..she has a simple one level small home to take care of. The park has a huge pool with a community center. Lots of activiies available if your interested. The rules to live there are you can only live there for 7 months out of the year..then they come home to ohio and live in their regular house. Florida is warm and the cost of living is similar to ohio. Plus if you become a permanent resident there isnt any income tax in florida. If i find a med that works i'll pass it on!

dorothy57

Posted by @dorothy57, Dec 12, 2011

We have been checking from ft myers to Naples area but can't really afford two places. Hopefully it will happen someday! Where in Lakeland, if you don't mind me asking?

dmdouglass

Posted by @dmdouglass, Dec 12, 2011

The park is called sanlan. Ft. Myers is very expensive because its a beach community. Lakeland is about 45 miles outside disney. West towards tampa from orlando

lindal

Posted by @lindal, Nov 13, 2011

I don't think anyone but someone else with this disease can identify with the pain and effects of what it robs you of life. I wish every doctor I have seen for the last 14 years could experience it for just one day because I wouldn't wish it for anyone for more than that.

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tamsuperstar

Posted by @tamsuperstar, Nov 17, 2011

I agree...everybody, including my husband, has no clue to the pain that I feel. I have been working full time and having to take care of my two grandchildren all by myself.. He won't help me. My grandchildren are 4 and 6.

janasr likes this
dorothy57

Posted by @dorothy57, Nov 17, 2011

You need to have some help before you really get to the point of not being able to do for yourself. I understand how you feel at times, we have a mentally impaired son who is 32 living with us also and sometimes it's like having a little child. Remember to do for yourself!!! May God give you a good day!!

jsorum

Posted by @jsorum, Nov 15, 2011

i have been getting more headaches lately and not sure what i am doing that is different. I have body aches most all the time. I am also working full time and taking care of two small children ages 5 and 2. I can relate that it is very hard to do this!

dorothy57

Posted by @dorothy57, Nov 15, 2011

I feel for you, especially having 2 young children! I will keep praying for everyone even though I might not know your names. I have ended up flat in bed for 2 weekends in a row, with the body aches and headaches. Almost had my husband take me to the hospital it was so bad. I am still trying to figure out why after a hernia surgery. I have done some reading about the llionguinal nerve, which they said they used extreme caution to avoid in my surgery papers. Been in pain ever since and getting worse!! Any feedback anyone out there? Everyone have a good evening!!

ross

Posted by @ross, Nov 18, 2011

I saw a neurologist on the Charlie Rose show. He said that chronic pain becomes a disease in and of itself. Drugs like Lyrica can help lower the brain's response to pain. I'm trying to convince my Dr. to prescribe it. Without Lyrica or something like it, your pain will not improve, and will most likely get worse - mine certainly has.

spookycat99

Posted by @spookycat99, Jan 25, 2012

Ross-you are so right! The pain does become a disease that takes over the other problem. Pain will not improve without something. Lyrica is not the answer for me, Methadone works. As much as I didn't want to be associated with drug addicts, once I gave in, my life improved 1000%! Chronic pain causes a person to become "hyper-sensitive" to any pain. The threshold is lowered and any pain you experience feels like an 7 as where a normal person (I mean without pain) would experience that same pain as a 2. It's because we have been in pain for sooooo long our brain's response to it become sensitive so we perceive it to be more than it really is. Unfortunately, Lyrica or other drugs are the only answer once you hit this "hyper-sensitive" state.

mrsartavia

Posted by @mrsartavia, Nov 21, 2011

To Dorothy, I was diagnosed with fm about 6 months ago and it is increasingly becoming more painful, headaches at night pain mostly dur night. Seems cold weather mks it worse. I fell for you, I hvent been told what medication to take for it for me warm epsom salt baths help some. I also experience not being able to get out of bed, but actually moving around is better

dorothy57

Posted by @dorothy57, Nov 21, 2011

Thanks, I will try that Epsom salt bath. I do take a lot of hot showers, but that only lasts for a while to take away some of the pain. Did yours start after a surgery? Today it's cold in Michigan and I'm having a painful day! It's bad when the people at church can recognize I'm in pain. I'm fortunate to have so many people in my life praying!! Time to get the heat packs going, thanks for the reply!! Will be praying or all!!

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mrsartavia

Posted by @mrsartavia, Nov 21, 2011

I hope you feel better,I know how painful it can be. I suffered from what they call IBS for many yrs, then had a gall bladder operation and ever since then all my problems got worse and they sd I have fibromyalgia. Hope the hot baths help I will pray for you.

fibrosufferer

Posted by @fibrosufferer, Nov 22, 2011

Have you tried using a hot tub? I do and get about an hour to 2 hours of relief from pain 🙂 I live in Michigan also
How long have you been diagnosed??

jammo25

Posted by @jammo25, Feb 12, 2012

HI ALL. I AM NEW TO THIS DISCUSSION. I LIVE IN NORTHEAST OHIO WHERE THE WEATHER CHANGES OFTEN. MY BODY IS LIKE A BAROMETER...I HAVE FB PAIN, WORSE EVERYTIME A NEW WEATHER FRONT COMES IN. I HAVE SYSTEMIC LUPUS WHICH THANKFULLY IS IN REMISSION NOW. I HAVE HAD 3 BACK FUSIONS ( 1 cervical, 2 lumbar) since 2009. HIP REPLACEMENT 12 YRS AGO AND NOW FACING OTHER HIP REPLACEMENT SOON. MY ELBOW IS A MESS AND THAT NEEDS REPLACED ALSO (ON THE BACK BURNER) I AM 69, HAVE A 36 YR. OLD CHALLENGED SON WHO CANNOT LIVE ON HIS OWN AND MY WONDERFUL HUSBAND HAS HAD BOTH KNEES REPLACED. AND THEY CALL THIS THE GOLDEN YEARS..HUH??? I HAVE BEEN TOLD BY RHEUM. THAT MY WORST PROBLEM IS THE FIBRO. HOWEVER I DON'T GET HEADACHES LIKE THE REST OF YOU????? MY HUSBAND AND I PURCHASED A DRY SAUNA TODAY HOPING IT WILL HELP. HAS ANYONE ELSE TRIED THIS? IF I CAN'T MOVE TO ARIZONA, I'LL BRING ARIZONA TO ME!! I ALSO STARTED ON CYMBALTA TODAY. HAS ANYONE ELSE TAKEN IT? LYRICA WAS NOT FOR ME. I ALSO TAKE 5MGM OF PREDSIONE, ARTHROTEC, PLAQUENIL (FOR LUPUS), ZOLOFT, IBU. AND PERCOCET DAILY AND I STILL HURT. I FEEL FOR ALL OF YOU AND PRAY FOR US ALL TO GET RELIEF. JUST LET ME KNOW ABOUT THE SAUNA AND THE CYMBALTA IF ANYONE CAN. THANKS!!!

fibrosufferer

Posted by @fibrosufferer, Nov 22, 2011

I know that feeling!! 🙁 I have a 13 month old that just started walking and getting into trouble..I'm 29 but I move like I'm 99...it's miserable!!!

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dorothy57

Posted by @dorothy57, Nov 23, 2011

Did you have a surgery or did it just come out of no where? It's horrible you are feeling that way!! Take care of yourself and have a wonderful Thanksgiving!!!

phinze

Posted by @phinze, Dec 14, 2011

The only thing that has ever worked for the headaches is Topamax. Some docs don't seem to even know or care what it is. Research it and educate them. As for the fibro pain, I don't feel the small pain benefit is worth the side effects. If you are part of Mayo, ask your doc to refer you to the Fibromyalgia Pain Clinic. They teach you how to react to the pain. It's not like the pain is ever going to go away, so we may as well figure out how to stop curling up in a ball when it comes. I'm learning to breathe and move when it comes. Sounds weird and stupid, I know. But it works and takes the edge off. I recommend it. I don't have the option of quitting my job and moving to somewhere warm and tropical. Flat down in bed makes it worse.

susanemartin777

Posted by @susanemartin777, Dec 21, 2011

I am wondering if anyone has tried Lyrica for pain. I have been taking Ibuprofen but it no longer helps me. I just worry about all the side effects. I am mostly concerned about the long term side effects. I don't need more med probs on top of the fibro.

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dorothy57

Posted by @dorothy57, Dec 23, 2011

I tried it but felt like I was having a out of body experience. People at work were talking to me and I couldn't here them to focus and also couldn't concentrate at all. Felt very high feeling, but I am very sensitive to drugs. Good luck to you, hope you find something that works. Itakea 1/2Vicodin ES up to 3 times daily, Valium 5mg and Motrin 60mg up to 3 daily. This helps some but going to see two new doctors in January.

spookycat99

Posted by @spookycat99, Jan 25, 2012

Don't try Lyrica! I gained over 100 pounds in 6 months on it! It did help the pain, but i would rather be skinny in pain that fat and not, lol! Plus, it trips your mind out. Like the other person said, I had an out of body experience. My doc has just put me on methadone after resisitance and now I find that my pain is down to 3-4 and I can pretty much live a normal life finally! I stopped the topamax after tapering down from 3 and night to 1/2 a night and then every other night. so far no migraines and only headaches that advil takes care of. I cross my fingers that this is it and I can raise my 3 (hyper!) with joy!

kathydlr

Posted by @kathydlr, Jan 16, 2012

Lyrica has a higher weight gain than savella. The ibuprofen can give you rebound and give stomach problems too, so just watch.

shingles

Posted by @shingles, Dec 23, 2011

I have a friend with fm. How much does exercise help? She finds swimming a huge help. I don't know what other people go through. It must be a challenge to have fm!!!!

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kathydlr

Posted by @kathydlr, Jan 16, 2012

I take savella for the Fm, but having a really bad flare. I get occipitial nerve injections for my headaches and take muscle relaxers everyday as well, but the headaches are still here with 100mg of Imitrex and two foircet as well. I have tried pt, exercise, diet- glluten free, no white, etc...anyone having luck with something for the constant pain? Iwill not take topamax as I was a lucky girl and got glaucoma from taking 200mg a day. Rare, but a real reaction.

dorothy57

Posted by @dorothy57, Jan 18, 2012

I am in sort of the same situation as you, at least it sounds like that!! I took Savelle but had bad side effects from the medication. I take Valium morning and night, fioricet for the headaches, vicodin es, which I take a 1/2 tab two to three times daily and Motrin up to three times daily. I also have to take the compazine for the nausea for the headaches also. Very frustrating with the headache situation because I wake up out of a sleep with a headache that feels like my head is going to explode. Wanted to go to emergency but decided what are they really going to do for me, besides do what I do, medicate! Sorry to hear about what happened with the glaucoma, that is a sad thing. I am going to talk to some new dr's and also about getting epidural shots. Hope you have better results soon!!! Take care!!

kathydlr

Posted by @kathydlr, Jan 18, 2012

Thanks Dorothy, but the shots are occipitial and are in my skull, back of head with a local. Could sedate, but said ha are worse than shots. This flare is awful tho. Just updated to 150mg a day of savella and take the 100-200mg of Imitrex and the 1-2 fiorcet too. The waking up is tee worst part. Uhhgg..good morning. The side effects were bad for week to ten days, but read if coulld push past would be worth it. Neurologists tells me...worst patient Cu's I wont slow down, said cant or will stop. Stopping not an option as only 44, but work full time, stressful job, take care of grandson, 21 months old. Thank God husband a nurse as he helps a lot!! Wishing you luck. Rochester ass where we found releif first..for awjole

dorothy57

Posted by @dorothy57, Jan 19, 2012

Where did you go? Was this in Michigan? I just push forward also working full-time and driving to and from work a hour daily. Sitting around all day would do me no good I have worked for 40 years in the retail end of pharmacy. I like to be busy, so this has really been a hard thing for me having to slow down. I hope that something works for you!! I am 57 and I will not stop either!! My son just asked his girlfriend to marry him, so now we have things to plan for!!! That is good for my mind!! Have a wonderful day tomorrow, to you and all that are dealing with our FB!! I surely couldn't do this without God!!

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kathydlr

Posted by @kathydlr, Jan 20, 2012

Amen to that. I live in Pennsylvania and went to Rochester, Ny the first time...then saw my Dr from Rochester in my :Neurology magazine, so I know she was the best. That and my four hour appointment! But she helped..however got notice today that insurance is going to deny, but I have a great employee assistance program that help me out. I do notice that weather affects
e, how bout you? Have you found any relief with anything? Have a great night

dorothy57

Posted by @dorothy57, Jan 20, 2012

Went to a doctor today about the migraines he says we are going to try two sets of shots and go from there! Having a lot of aches tonight, but getting through it all!! I am going to check a clinic that doesn't take insurance in February, maybe my insurance will pick up some but I doubt that they will!!it's terrible when you find someone but cost big bucks!! Hope the insurance thing works out, that stinks. Yeah the weather is a lot colder today and I really can feel the difference!! Have a great day tomorrow!!!

undiagnosed3

Posted by @undiagnosed3, Feb 11, 2012

I've been diagnosed with fibro but have been suffering from daily headaches for 10 years. The first doc that diagnosed me with fibro put me on amitriptyline. I took it and within a day my headaches were so bad I thought I was going to die--all I could do is crawl up in a ball and cry. I tried working but had to go home. Within two days my heart started beating weird and I was getting dizzy so I tried getting a hold of my doctor. The nurse called and said to get in STAT bc I was having a bad reaction to the medicine. I saw a jerk of a doc who could've cared less--just sat there staring at me sobbing, listening to my heart and asked if I'd tried Advil for my headaches. !!! He THEN told me that if the amitriptyline didn't help in another two days to double up and if that didn't work to TRIPLE up!!! I decided to stop taking it so even though I only took it for a week I weened myself off it and went back to my percocet and muscle relaxers for my head. When I saw my DO he was the most upset as I have ever seen him--he said I could've died if I continued taking that medicine bc it's a rare reaction to have heart failure but I was showing symptoms that weren't even cared about. I tried taking hydrocortisone for awhile but it only helped minimally and caused me to FREAK OUT--I gained 20 pounds in 3 months, my face became so swollen that a coworker couldn't help herself and blurted out "your face is sooo swollen!!!" I couldn't bend down anymore, I couldn't move my head bc I got a big lump in my neck... I had blood work done and pretty much everything was in the "high" range so I went to a rheum who said they were all side effects of the hydrocortisone. The only thing I can do is take hydrocodone for the headaches and pain; daily muscle relaxers; valium at night to sleep; Excedrin for those headaches I know all too well (often wake as well to my head POUNDING something wicked); Advil for the "inflammation" no doc can find or diagnose; and OTC sinus medicine for sinus problems that I've had 3 surgeries for. I've tried every medication for migraines which only creates other problems (constricts throat and feels like someone's squeezing my head) and one of my parent's docs recommended I try Topomax. I read about it and it says it makes birth control less effective which I can't have--I was diagnosed with PCOS and without my birth control I break out all over in acne, have horrible pelvic pain, ER worthy headaches, hair growth where I never had it before... I wish someone could figure out my headaches bc the body pain along with headaches is draining me of everything.

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spookycat99

Posted by @spookycat99, Jan 20, 2012

You have to get off the Imitrex! I was taking it for 5 years and found out that it gives you rebound headaches!!! I was so mad that taking something for migraine causes more migraines! WTF! You are stuck in a vicious cycle of hell. I have new pain management doctor who is a God send. She put me on topamax and I quit taking Imitrex cold turkey. I suffered through only one 2 day migraine and I am happy to say that I have not had a migraine in over 2 years now! Yippee!!!! I get a headache every now and then but Advil takes care of it. Best thing is that side effect is weight loss and I lost 48 pounds. Looking hot plus no headaches works for me!!1

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kathydlr

Posted by @kathydlr, Jan 21, 2012

Would love to get off Imitrex,buy cant take the topamax due to it giving me glaucoma. But just got notice the insurance is not going to pay for shots either. Def a WTH moment. Will be seeing Dr who does botox next. It just sucks! Trust me...would love to back to topamax due to weight gain from going off topamax. I ha e tried everything so any ideas would be great.

marylynette

Posted by @marylynette, Jan 23, 2012

I am unable to take any of the normal meds for this condition and have found, of all things, that a warm bath helps relieve the pain for several hours. I have a bath mat that is the full length of the tub, a cover so that the water can get really deep and even a spa thing to gently move the water. Our bathroom was really cold and so I warm it with a space heater before starting my bath. I have found that while this is time consuming it is better than being on narcotics and helps the pain I still get from an ankle I broke over a year ago. My family has gotten used to me and my two baths a day, I have found the time great for reading and even napping. Several different specialists have told me that the warm water is the best thing for fibro, it just seems too simple for most to believe it works.

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dorothy57

Posted by @dorothy57, Jan 23, 2012

Tried the hot showers but not baths, still working full time don't really have a choice unless we sell houses. Hopefully that will happen soon and I could work part time and get into a place that has a pool. My one doctor said that would be good!

anon79545058

Posted by @anon79545058, Feb 11, 2012

Hi do you have this symptoms depressed, anxiety, fatigue syndrome,? I have muscle aches I tried massages, Chiro , hot tub, walking, swimming, physical therapy and they do help with the pain in my case they will last me about a relief for two hours and I'm back with pain again and with my meds it helps a bit I .try praying and find a way to distract my pain like calling someone or texting , drawing, i try to write my thoughts in paper
What ever helps to lower down the pain meditations also helps and nice scenery helps to look at avoid thinking the pain also .good day happy thoughts .Take care

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