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mare

Fibromyalgia

Posted by @mare in Brain & Nervous System, Jul 10, 2011

Community for those who have been diagnosed or who want to know more about the syndrome.

Tags: neurological, Rheumatology, womens health, mental health, sleep problems, Skin Conditions

sick&tired76, KristenChez, Mare and 2 others like this
bern1234

Posted by @bern1234, Jul 14, 2011

I have had fibromyalgia for about 2 years I just take my meds and live with it . I just started exercing and sometimes I make it and sometimes I don't. I also suffer from a stomach condition were I can feel fine one minute and then the next I am in bed with a very bad pain, and can stay there days.

bern1234

Posted by @bern1234, Jul 14, 2011

I also just started with almost white or clay colored stolls. does anybody have thath?

useless

Posted by @useless, Jun 13, 2012

To Bern1234 I think you need to see a doctor. That is definitely normal

honeybee6636

Posted by @honeybee6636, Oct 17, 2011

Hi Bern, I was wondering what meds you are taking for Fibro? I just started Savella. I hope it works. I am sorry your having a hard time.

useless

Posted by @useless, Jun 13, 2012

I am 53 and was diagnosed about a year and a half ago. Thought I had the flu at first then saw a multitude of doctors and finally got diagnosed. Fight with insurance company to let me keep doing aquatics therapy. I take 2400mg of neurontin a day along with a generic extra
strength Excedrin. I did the 3 week pain program there at Mayo which helped. Got home and had no place to exercise so am back to square one. So depressed. Am seeing someone in July about electric shock therapy since all antidepressants make me sick. Hate this illness and hate life. All friends are gone.

debgivan

Posted by @debgivan, Aug 16, 2011

I am just beginning to deal with the diagnosis of fibromyalgia. Just wondering what medications worked best for you.

aleta

Posted by @aleta, Aug 16, 2011

I have had fibro for about 13+ yrs. I am about at my wits end. As of right now, I take 3600mg. of neurontin, 200mg of savella plus sleeping pills. If I didn't take the neurontin, I wouldn't be able to walk. Soft exercise if you can. I work in a factory with concrete floors, I go home hurting. I do take pain pills or else i couldn't work. Some days are bad some aren't so bad. Good luck. oh yeah, I'm 48.

Useless likes this
jsorum

Posted by @jsorum, Aug 17, 2011

Have you thought of getting a new job. I was on my feet all the time at my old job and I would just go home and go to bed. Since i found a job where i sit most of the time i can tell a big difference.

cocacola

Posted by @cocacola, Oct 16, 2011

I am on my feet all the time & I have so much foot pain & am so tired all the time. I come home & go to bed. I've thought about getting a desk job, but I am 59 & finding a job isn't easy. How are you doing?

Anonymous likes this
phinze

Posted by @phinze, Nov 11, 2011

I was diagnosed three years ago. My husband and I have a dairy farm, but I couldn't do the work anymore, so I went back to working in an office. It's not that much better - I have a heating pad on my back and shoulders almost all of the time or I can't stand to sit in the chair. Doesn't seem like there is a happy medium with this stuff!

janasr

Posted by @janasr, Feb 18, 2012

I am considering filing for disability due to my fibromyalgia symptoms. Does anybody know anything about the process. It looks very confusing to me

mc2012

Posted by @mc2012, May 16, 2012

Highly recommend a disability firm Allsup, who has a very high success rate.

debgivan

Posted by @debgivan, Aug 17, 2011

Thanks for your reply. I will see my dr. tomorrow and hope to get him to work with me on a plan. I am 52. I work in an office but I go home exhausted. I take antidepressants already which helps some but I can't sleep and I take Vicoden to get through the day because of the pain. I will let you know what he says.

aleta

Posted by @aleta, Feb 23, 2012

Hi Debgivan, I couldn't sleep either. My dr. put me on a low dose of neurontin when she first diagnosed me. After that the sleeping pills came. I can't stay asleep all night. I know how it is. I can't afford to get another job. I've been there 14 yrs. It doesn't matter anyway. I hurt constantly. I also take vicoden. It's a vicous cycle. Good luck.

janasr

Posted by @janasr, Feb 18, 2012

I just started on savella. What side effects have you found. I don't like the way it makes me feel but want to keep trying

aleta

Posted by @aleta, Feb 23, 2012

I couldn't tell if it really made a difference. My dr. put me on 120mg. of cymbalta which he uped from 60m. So I had to stop the savella because of the 2 do not mix well at that dose. Still on the neurontin, I also take meloxicam for an anti-inflammatory as well and trazadone to help me sleep. I can't explain the sympathy I have for women who have this awful disease. No one can imagine the pain one feels until they've tried walking in their shoes. Good luck, sweetie. How long have you had it? If you don't mind me asking, how old are you?

janasr

Posted by @janasr, Feb 23, 2012

my dr had me on 120mg of cymbalta and savella. maybe that is why it made me feel so bad if the 2 don't mix. i take neurontin, celebrex, cymbalta, hydrocodone, and nothing for sleep yet. i don't sleep much but i don't want to take anything more than i have to so i am living with that right now. i am 42 and started having severe symptoms after a hysterectomy in June 2011. as is look back now i can see that i have had this for a very long time but was mild until my surgery and i could sleep before the surgery. i have always taken naps and i feel so much better after one. when i wake up my pain is at a minimum. i am considering filing for disability but too scared right now. i'm afraid it won't work out and i will loose my job in the process. i love my job but i have so much pain i can't handle working. so sorry you are having to go through this too. i hope to talk to you soon as i am wanting any advice i can get on this illness and on disability.

mc2012

Posted by @mc2012, May 16, 2012

I highly recommend a disability firm Allsup. They have a very high success rate for receiving Social Security Disability Income.
It can be a lengthy process,it was 13 months for me.
Hope this helps.

lovie

Posted by @lovie, Aug 31, 2011

I have just been diagnosed w/ fibromyalgia and the doctor started me on Cymbalta, I also take Tylenol Arthritis. This diagnosis is a difficult one to deal with. Hope you feel better soon.

Useless and Anonymous like this
maridenise

Posted by @maridenise, Sep 18, 2011

Does the Tylenol Arthritis help you?

lovie

Posted by @lovie, Sep 19, 2011

Yes. My doctor suggested I take the Tylenol Arthritis along with Cymbalta. I take 2 every 6 hours. I also take .25Mg Zanax for anxiety. The combination of drugs help. I am a property manager and work long hours. I feel better now than I have in 9 years.

maridenise

Posted by @maridenise, Sep 18, 2011

Hi, I was diagnosed with Fibro 8 years ago. In the last 3 years have been taking Lyrica. It takes the edge off is the best I can say.

jsorum

Posted by @jsorum, Aug 17, 2011

I was just diagnosed in March with fibro. I tried medications but found that I had too many side effects from them. I am now taking nothing and learning how much my body can handle in one day. Of course if I have a flare it is different. I also have two small children so they get most of my energy. I have had to switch jobs.

tslvtwins

Posted by @tslvtwins, Sep 25, 2011

I have had fibromyalgia for 14 years caused by whiplash and other soft tissue injuries from a car accident (hit from behind). The only thing that really works for me to relieve the pain is full body acupuncture. I

ElsieG likes this
lisab1

Posted by @lisab1, Nov 3, 2011

I was diagnosed with fibro last spring after an accident two and a half years ago. Am weaning off cymbalta (too many side effects, hypertension was the last straw ). Has anyone weaned off this stuff? I feel like I can't do anything. Am weak dizzy can't drive been in bed for better part of a week. Have kids and need to get my life back. How long does withdrawal take? Anyone know??

phinze

Posted by @phinze, Nov 11, 2011

I'm in the process of weaning off. This is awful - I understand what you're going through. My doc doesn't even seem to acknowledge that this is a problem! I'm starting to think that I'm crazy and this is all in my head! I can't take Cymbalta because of the side effects: headaches, dizzy, sweating. I thought I'd rather have the pain, but now. . . .

gt

Posted by @gt, Nov 8, 2011

Does any type of bed help with sleeping? A foam mattress? More firm?

phinze

Posted by @phinze, Nov 11, 2011

I sleep in a very warm water bed. It's the only time I'm not in pain.

dorothy57

Posted by @dorothy57, Nov 15, 2011

Tried about 7 or 8 drugs by now and nothing but side effects, first one blurry vision!! That doesn't work while working pharmacy. Pretty much getting by with Valium 5mg morning and night, 1/2 Vicodin Es up to 3x day and Motrin 600mg maybe once or twice daily. Use Fioricet for the headaches and compazine for the nausea when I feel them coming on!! Have Fioricet with codeine for the horrible ones, hate useing it because it knocks me out cold. I have worked pharmacy for 40 years so some of this scares me a lot!!! I hope you find something that helps!!

susanemartin777

Posted by @susanemartin777, Dec 16, 2011

Any comments about Lyrica?

elsieg

Posted by @elsieg, Jan 3, 2012

You could read above what I said about Lyrica. Hope it helps.

janasr likes this
elsieg

Posted by @elsieg, Jan 3, 2012

Of course every body has different needs but I found (even when I travel) if I just sleep with a pillow between my knees it relieves me of quite a bit of night time pain. It takes a couple of days to get use to it but I have been surprised how much relief it gives me with some joint pain in my hips and lower back. As far as mattresses go my husband and I both have done best with a good mattress with a pillow top--made but the Diamond company. We've tried the sleep by number air mattress and it wasn't as good. The pillow top (dense foam) work better than (in my ever so humble opinion..) water beds and firm mattresses. Good luck!

gt

Posted by @gt, Jan 4, 2012

Thank you Elsie, At the moment, I cannot sleep on my sides, but I have found the pillow helpful. I have been searching for a mattress for quite some time, and will look at the Diamond company. Thank you for the info on the pillow top too.

shelby1975

Posted by @shelby1975, Jun 10, 2012

Hi i too can not sleep on my side, back, or stomack without alot of pain. i have found that the only way i can get a halfway decent sleep is sleeping half on my side and stomach, that way i avoid sleeping on those terible leg muscles that can ache and hurt. I put one leg straight, and the other I bend at any angle that relieves the pain in my legs back kneck. I hope this can help, i have been suffering with fib. m. now for upwards of 16 years and can no longer even sleep curled up to a spouse. hope this helps

phinze

Posted by @phinze, Nov 11, 2011

I was diagnosed about three years ago after an autoimmune issue in my eyes. I'm at my wits end. I tried Cymbalta and have to stop due to side effects. The docs wants to try a different med, but honestly, the side effects look terrifying! Any suggestions? Lyrica's side effect list is pages long! Is anyone taking this?

susanemartin777

Posted by @susanemartin777, Dec 16, 2011

I haven't tried Lyrica either but have been wondering how well it works. I have had really strong sharp -shooting pains in my head lately that I can't deal with.

phinze

Posted by @phinze, Dec 18, 2011

I opted to stay away from Lyrica and went with Topamax for headaches. Love it. My headaches have decreased significantly and side effects are minimal. Also did the 2-day fibro/pain clinic at Mayo. If you haven't, you should try it. Gave me a new outlook on meds and how to approach my reaction to the pain instead of running to the medicine chest. It's worth a try.

elsieg

Posted by @elsieg, Jan 3, 2012

Lyrica makes you really, really tired at first but it can help with pain and sleep. This is one drug that I would suggest you try. The main side effects that gradually lessen with time is sleepiness, memory loss, and a couple of small things (vision and concentration...). I opted to go off it after 6 months because of needing to concentrate for school and and I found it really wasn't helping me with pain all that much, BUT the pharmacist told me it helps a lot of people with fibromyalgia. Just the first couple of days of taking it plan on not doing too much until the sleepiness resides. Thanks to "phinze" for telling us about Topamax for headaches!

janasr

Posted by @janasr, Jan 15, 2012

I use to take lyrica but had to stop. It was causing tremors. It seemed to help a little nut not worth the side affects for mr

deborahv

Posted by @deborahv, Sep 4, 2012

hi i have had fibromyalgia diagnosed about 5 years ago, but looking back it was alot longer , just didn tknow what it was. now i realize it is a mixture of chronic fatigue and fibromyalgia.
the most important thing is to understand that we can all offer each other information on what is helpful to us but also to answer questions.
i also treat people with fibromalgia and chronic fatigue; before i was diagnosed. ironic , so i do know alot about the medications.
cymbalta is marketed as a cure all for fibromyalgia and pain. it works the same as any of the other serotonin medications such as pristiq or the classic prozac.
it is the serotonin that helps people in pain, especially since physical pain improves when you have less emotional pain.
but cymbalta has many side effects, tremors, weight gain and feeling foggy.
lyrica has weight gain problems just like neurontin. i dont find either of them very helpful for my patients or myself.

deborahv

Posted by @deborahv, Sep 4, 2012

lyrica does have a lot of side effects. it is marketed again for treatment of fibromyalgia but is not a wonder drug. i dont use it for myself or clients.
i have met with scientists at different conferences and have done as much research as i can and will continue to on this disorder.
so far what i know helps me is epsom salts baths once a day for the pain. tizanzidine for muscle spasms and pain. i can only take this at night; and that is how i prescribe it to my patients although the labeling states to use it throughout the day. i dont know anyone who can use it during the day if you want to function.
i also use lamotrogine, which is off label ; so many rhematologists wont use it, but it is in the same class of medicaitons as neurontin without the foggy feelings and tiredness. it also helps with mood.
i havent found anything for daytime pain and i really think the dosing of the pain medications are so low that it does not do a good job. but most doctors are so concerned with addiction they dont really deal with the pain.

spktrue14

Posted by @spktrue14, Dec 30, 2011

Hi I was diagnosed about 6 yrs ago and refuse to take any Western meds. However, I do see an Herblist. I read so much literature and found that Fibro ppl don't repair the way other ppl do. So, i found a herb that works. Its called Fibroresponse abd contains a lot of Magnesium and Malic Acid. I also take natural Anti-inflammatory, flax seed oil, amd melatonin. I am doing pretty well and I exercise 3-4 times a week. Would be interested in sharing with others an trying to help others on the road to recovery. There is life with Fibro. Keep looking forward and feel free to contact!!

elsieg

Posted by @elsieg, Dec 30, 2011

I am 57-hard to admit-but I only say this to let others know that I have lived with Fibromyalgia since I was 21. Of course the doctor thought it was some form of arthritis back then. Recognizing it and taking action early on has helped me be in shape to raise six children and now be an active grandmother and college student. The following are things I've resigned myself to:
* For 13 years a little pill (about 50 mg or more) of imipramine worked. It helped with sleep and with the pain.
*After trying Lyrica, Cymbalta, amitriptyline and MORE, I have settled on Ibuprofen with Tylenol 4 one day and the next Lortab and Ibuprofen. For the night time i switch every third day with soma, cyclobenzaprine (3- 10 mg tabs), and tamazepam (2-15mg tabs). The switching off helps prevent the building up of a resistance to any one pill and prevents having to increase doses. I do NOT like doing all this for the addiction reasons, plus what it is doing to the heart and liver (over time). My doctor is a good man but even he does not like seeing me take so many different meds. And in spite of all this, I still live with pain. In other words, this does not take all the pain away! Oh and I take about 1 Xanax (divided into thirds) a week.
*My stomach is inflamed and acid reflux is always a problem along with bad pains that occur after eating certain foods. So right now I am keeping a food diary and trying to eliminate what causes pain.
*I read an article that said carbs are not friendly to fibro-patients, which I have suspected for years (but my body seems to crave them-probably because of medications).
*Vitamins and supplements are a big part of each day. (Calcium, magnesium, malic acid, vitamin C, D and E, etc.)
*Stress, as most of us know, makes this condition worse.
*My regular exercise involves water aerobics in winter and biking in summer. Feet problems prevent long walks.
I would love any suggestions or even warnings. I try to keep a positive outlook but the pain affects everything I do.

mare

Posted by @mare, Jan 3, 2012

Elsie,
Hi. Be happy that you are alive no matter what your age. I'm 56 and celebrating that I'm still alive.
I was diagnosed 2 years ago but I've had symptoms for years. I've tried all of the medications that I see others have tried. I just got through withdrawing from Savella. I did not think it was working until I got off of it but the side effects of suicidal thoughts was what caused me to decide to stop.
In addition to using western medicine I also use Eastern techniques such as acupuncture as well as meditation. I also try to have a massage (deep tissue) at least once a month.
It is hard when the pain hits but I have learned to breathe through it and keeping in mind that it won't last forever. Keeping my stress level low is essential but not always easy.
As for exercise, I find a good balance with walking. I've done water therapy with mixed results. I have learned the hard way of trying to keep a balance. if I do too much in a day I will pay for it the next day.
I hope this helps you in dealing with your situation. I know what works for one person may not work for another.

Be happy and enjoy one day at a time in the New Year.
Maryanne

janasr likes this
elsieg

Posted by @elsieg, Jan 3, 2012

Thank you for taking time to respond, I really appreciate it. I guess the route of trying so many medications just gets to me. I don't like it--probably because of side effects, cost and time. I do try to stay happy by thinking and doing for others as much as possible. I do plenty for myself too. I enjoy my exercise and massages (when I feel I can afford them!). Take care and "Happy New Year" to you also!

missroxiebella

Posted by @missroxiebella, Mar 26, 2012

Hello 🙂 I am 26. Diagnosed 4 years ago with fibro. The pain and symptoms have gotten worse and debilitating! I have two small children and I am a single parent having a very difficult time just getting by. I've read about some trigger point injections done at UCLA that helped other fibro patients. Has anyone tried it? I've tried every medication that has been offered for fibro patients nothing is helping. Ideas? Help!!!!

Anonymous likes this
birdntroutlady

Posted by @birdntroutlady, Mar 27, 2012

I was just diagnosed in Feb of this year with FM-think I had it longer. I am taking gabapentin 200 mg (neurontin). Seemed to help me. Doctor told me to keep moving and I am getting around a whole lot more than I did. I will start water therapy as soon as I get rid of urinary tract infection and then learn some other exercises. I am 65 and happy to know I don't have bone cancer. I have friends around here (TN) who've had FM for 20 + yrs and they're still moving , so don't give up. Work and rest and eat healthy. Good luck.

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