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anyone here have Fibromyalgia?

Posted by albertar z7 LINY (albee7447@aol.com) on
Sat, Jan 12, 08 at 1:11

Does anyone have fibromyalgia and if so do you take Lyrica? Can you tell me the affects it has on you?
Alberta


Follow-Up Postings:

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RE: anyone here have Fibromyalgia?

I do not take Lyrica. I take Cymbalta which is used for depression but for some reason works for some people with fibromyalgia. I now only have flair ups not the every day pain I used to have.


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RE: anyone here have Fibromyalgia?

My friend has a similar condition and his neurologist gave him samples of Lyrica to try. He said he liked it much better than the Tegretol, but it was so expensive he switched to clonazepam, which he says doesn't work very well for him.

He said he did not have any noticeable side effects with the Lyrica and he loved it, but he also never takes the full dose of any of his prescribed meds because of the fuzzy headed feeling he gets. He is also on Ultram (for pain) and amitriptyline (an antidepressant to help him sleep)


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RE: anyone here have Fibromyalgia?

My sister has been taking Cymbalta for over a year for her fibromyalgia. She said it's somewhat better but stress and not enough sleep trump Cybalta's help. She just got a breathing machine for sleep apnea (stopped breathing 16 times during 8 hour sleep study) and they've got the machine pumping as much air as it can put out. She felt much better after getting one night's sleep at sleep clinic but lungs hurt from new expansion they have to get used to. Think some restful sleep will do her more good all the way around and maybe allow Cymbalta's full effects to help with pain.

Good friend of mine is certified massage therapist and works on many fibromyalgia patients. Light forms of accupressure and massage can work to certain depth to calm nerve endings thus reducing pain. Certainly cheaper than drugs if one of many can be reduced/eliminated.

I usually figure noninvasive measures are worth a shot in addition to medication if you have the time and money to put towards them. Some relaxation techniques can help if done regularly to keep body "loose" but it's hard to stop pain this way once a flare up has started.

I know some people think it's hokey but the mind-body connection is a critical part of these syndromes. In my sister's case she has a cluster of autoimmune diseases/syndromes which medicine & science haven't figured out yet so they get treated piecemeal without much integration.

Dafy, Tegretol is an antiseizure medication. Some epileptics stop taking their meds because of side effects until seizures force them back on. Clonazepam is a benzodiazepine which is an antianxiety agent. Both try to calm the brain/nerve "storms" in hopes of slowing down pain sensation transmission.

It's not a life enhancing way to try and live particularly because they make so many people feel fuzzy as your friend's experienced.

If your friend switched meds because of cost he might check out the sites that offer meds to patients who meet their compassionate care provisions. People in this country would be shocked to learn how many qualify for free and/or very low cost name brand & generic meds from pharma companies. I know one woman who's getting all her chemo drugs for nothing and that's one huge chunk of money.

This is gateway site that takes you through various companies application procedures:
http://www.rxassist.org/

There are plenty of free local medical clinics around the country who get free meds for people who we might not consider "poor" but meet drug company criteria. Doesn't hurt to check it out when taking number of meds since costs add up pretty quickly.

*Alberta, good luck. I've seen how this effects one's life and I wish you the best. Sometimes if you can stick out the possible side effects for a time they become tolerable versus the pain. Who knows? You may not experience much in the way of side effects with Lyrica as every person's system is different. Keeping my fingers crossed for you!


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RE: anyone here have Fibromyalgia?

newbie_in_nj, thanks, though I do know what those meds do, I've been doing medical transcription for about 15 years. The condition he has is not fibromyalgia, but Charcot-Marie-Tooth, which is a hereditary degenerative nerve condition, causes severe pain, tremors, etc. He was adopted so knew nothing of CMT until he was diagnosed about 8 years ago. The antiseizure med is more for the tremors than anything else. He's a stubborn cuss who doesn't think the meds will work so obviously they don't; especially since he won't take the full recommended dosages. I can only nag so much. I definitely agree that you have to think the meds will work for the meds to work. I've been after him for years to do as much stretching as he can to help keep as much movement as he can. He agreed to a massage once and that was only because a good friend of his had just been licensed in massage therapy and convinced him to try. Of course he could barely move the next day because he was too relaxed. His neurologist is great and gave him enough samples of Lyrica to last about 6 months, which he stretched out for nearly a year using it only as needed. His insurance covered gabapentin (tegretol) when he was first on it, then stopped covering it, then only covered the chewable that didn't work nearly as well.

Albertar - He liked Lyrica very much, even only taking it for breakthrough pain and did not notice any side effects.


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RE: anyone here have Fibromyalgia?

Dafy, you must have the patience of Job to do medical transcription for so many years although learning about so many facets of the medical field is interesting.

Wow...Charcot-Marie-Tooth is a stunning illness. Difficult to watch in someone for whom you care. Chronic illness, particularly without "cure", brings its own frustrations and a certain stubborn streak exacerbated when people travel from doctor to doctor and transition from medication to medication looking for some sustained relief. Not saying anything you don't already know very well. My thoughts are with your friend and those who care about him.


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RE: anyone here have Fibromyalgia?

I just want to thank all that have replied here, I'm on the Lyrica now for the past week, and though I'm sleepy alot, it does seem to be aleviating the pain somewhat. As for cost....its a $50.00 a month co-pay for me, which is for me rather expensive, but if it works, I'll pay it. Thanks again to all of you.
Alberta


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RE: anyone here have Fibromyalgia?

Glad to hear some relief, Alberta. Get in some warm up stretching before you tackle those WS jugs! Good luck.


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RE: anyone here have Fibromyalgia?

  • Posted by shimla 5 Upstate, NY (My Page) on
    Sun, Jan 20, 08 at 12:11

Alberta -

The most common complaint from people that I know taking Lyrica is the weight gain. Not everyone had an extensive amount of weight gain but quite a few really porked out from the medication. All of these RX's have some kind of drawback to them. I hate to say it but you have to experiment with the drugs to see how you individually react to each. Then you have to weigh (no pun intended) the side effects compared to the benefits of the pain relief you are receiving. From what I've read from users, Topamax sounded like the preferred medication for people having problems with Lyrica.

I was on Neurontin (for nerve pain) which had high complaints of memory loss. I didn't notice too much more of a memory loss than on a non-medicated day (lol) and the pain relief was more than worth the side effects. Many folks that switched from Neurontin to Lyrica reported they liked the Lyrica more. So, unfortunately, it's trial and error.

It took me 4-5 days to adjust to the Neurontin before the sleepiness wore off and I got used to the medication. I went through the sleepiness every time I had to increase my dosage so I tried to plan an increase around my work/driving schedule. My doctors started me on the smallest dosages possible and then worked up the dosages accordingly. If you are only "somewhat" noticing pain relief and are currently on a low dosage speak with your doc at you next appointment. He may be able to make a simple adjustment to your dosage for you.

I haven't spoken with too many folks with Fibro but one lady I know said that pool therapy was beneficial. I hope you are feeling much, much better soon. I know the pain is no picnic and the medical treatments are completely inadequate.


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RE: anyone here have Fibromyalgia?

Just another update on this conversation, first thanks to all that replied, I'm on the Lyrica now (twice a day) and I'm actually feeling so much better pain wise. The pain is still there but not as painful and I can deal with it. I'm also sleeping much better, throughout the night and not waking as often as I did, which could have been 5 or 6 times a night. One of my concerns though is that the insurance company has only approved this med for 1 year. Guess I'll have to fight with them next year.
Alberta


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RE: anyone here have Fibromyalgia?

  • Posted by shimla 5 Upstate, NY (My Page) on
    Mon, Jan 28, 08 at 21:57

That's really great news, Alberta. It's good to read your pain level is down. Getting a good nights sleep is also so important. It's hard to deal with any kind of the pain when you haven't rested all night. You don't get into REM sleep waking up so often and it just makes it all the more difficult to cope when you are tired. I used to lie awake until 3-4am and have to get up for work! It stinks. Has the 'foggy' feeling lifted yet?

What did you have to go through to get it approved with your insurance company this time? Sometimes (and that's just sometimes, all insurances are different), it's just a matter of the doctor submitting a letter saying this must be the type of med you take and why you can't take what is on the normally approved listing of meds.

Have you read through the warning liturature on Lyrica? On some of the anti-seizure meds, if you abruptly stop taking it, it can cause a seizure. The stories that I have read from people that have gone through it are just bloody horrific. Our health care system leaves much to be desired. It's something really important for you to know if Lyrica is one of them and you might have an insurance snag when your year is up. Take a look at the hand-outs they give you with the rx.

There are a couple of things people do if they forsee a problem getting their meds. First is to get the paperwork going early with your doctor and insurance company. The insurance companies tend to drag their feet when anything needs to go through an approval process.

The second is to try to always keep a surplus on hand. (Never skip a dose, though). They usually let you refill 1 to 3 days ahead of your refill date. So, you just make sure to refill each and every month in advance. By the end of the year, you'll at least have a little stash so you don't have to suffer while the insurance company completes their nonsense activites. (Just make sure to finish up the older meds first so you're not hanging on to something that will expire). I try to do that with any type of med that's got to be refilled. If there's ever an issue where you can't get to the pharmacy (like down with a flu) you're not without!


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RE: anyone here have Fibromyalgia?

Alberta, glad to hear it's going well with Lyrica. Most people don't even think about what that lack of sleep means to total wellness to say nothing of trying to lug yourself through another day. Be well...and even better as time goes by.


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RE: anyone here have Fibromyalgia?

Alberta, glad to hear it's going well with Lyrica. Most people don't even think about what that lack of sleep means to total wellness to say nothing of trying to lug yourself through another day. Be well...and even better as time goes by.


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RE: anyone here have Fibromyalgia?

Hello to all,
My daughter has Fibromyalgia,it is a terriable thing to have, my heart goes out to all of you who suffer.Here is a posting she found,it explaines for the first time exactly how she feel's,and what really is happening in the brain,please have a look,it is good for family to view also.Good luck,my thoughts are with you.Carol
www.askdrjohnson.com


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RE: anyone here have Fibromyalgia?

  • Posted by shimla 5 Upstate, NY (My Page) on
    Mon, Feb 11, 08 at 18:33

That's a good link, Carol. Thanks for posting it. Sorry to hear that your daughter is suffering with this, too. My aunt was dx'd with it several years ago, I never knew much about it back then other than it was some kind of pain condition. It seems to be more common now a days or I just hear more about people afflicted with it. Alternative care is the way to go wherever there is an option available for it IMHO. Did your daughter happen to order his book or cd? I'm wondering if it has enough helpful information in it to be worth recommending to my RSDS group.


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Fibromyalgia video

Hello to all,i thought you might like to view this viedo about Fibromyalgia,my daughter has it and this viedo was a great help to her and the family.


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RE: anyone here have Fibromyalgia?

shimla,yes,she did order the book and finds it really interesting,she only goes with Alternative care,she gets massages, she has changed her diet,trys to get more sleep,this book and viedo explain what is happening in the brain,she also gets migrain headachs,alternative care is so expencive,insurance will not cover every thing,sad thing,they will cover drugs, but not something that really works.There are times when she is down for a very long time,and she has three children.The book gives a list of doctors who specialize in his tecnique,and tells you things you can try at home.Would you like to talk to her?I can e-mail you her address.


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RE: anyone here have Fibromyalgia?

  • Posted by shimla 5 Upstate, NY (My Page) on
    Wed, Feb 13, 08 at 18:49

Carol - I don't have Fibro so I don't think it would help to talk w/ your daughter but that was very nice of you to offer :)! I passed along all the information you posted up to my friends. Thank you! A couple of the girls are already checking it out. It's nice to get a little feedback on something before you make the commitment to purchase. Some of the people in my group have Fibro on top of RSD which just adds to their nightmare.

It's good to read your daughter is into the alternatives. These doctors only seem to have two choices, they dope you up or they slice you up! If you can find relief (not always possible) naturally, it's so much better for you in the long run.

Ah, the insurance companies! They are very, very slowly coming around but I'm not sure they'll ever truly get to where they need to be. If you're looking at anything that's not main-stream you just end up fighting a losing battle with them. It really can drain you financially when you find yourself in a chronic situation.


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RE: anyone here have Fibromyalgia?

shimla,you are so right about financially being on your own,Fibro,as you know is awful,no one should have to suffer the way these poor people do,are you a doctor,you mentioned "your group" and what is RSD.?I did talk to my daughter,and she said she would be willing to share her info. with any one who would be interested.I am happy you are passing along that veido,i think it is very informative.


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RE: anyone here have Fibromyalgia?

  • Posted by shimla 5 Upstate, NY (My Page) on
    Tue, Feb 19, 08 at 21:31

Carol - RSD is Reflex Sympathetic Dystrophy aka Chronic Regional Pain Syndrome. It's an unimaginably painful chronic nerve disorder. It's not very well known and you only have a very small window of opportunity of reversing it if it's caught early enough. I'm not a doctor by any means, I'm just involved in a private support group. If I see something that may help someone, I really like to pass of the information. So many of the patients have no medications to take that help and they are just beaming in agonizing pain 24/7. I have a blurb on my page with a link. Someday, I hope it's a well known disorder like cancer and MS. Apart from the research dollars it would bring, it would save an untold number of lives just by recognizing the signs and symptoms. It's very, very complicated. You can develop it from any type of injury/surgery ( even a minor sprain). Really, the important thing to remember is if you find yourself in acute abnormal pain (you'll know, you'll think you must be going mad) to get help asap.


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RE: anyone here have Fibromyalgia?

shimla,

I just saw last night on T.V.,there is a new trearment for chronic pain,using electic current,i don't know how you would find more info. on it,but it sounded very promsing.
No one should have to live in such pain.

I do have a friend with what sounds like what you explained, she told me the name, but i did not commet it to memory.She has a pack in her back that releases pain med.she got this from a carpul tunnel(spelling?]operation,just wrecked up her nevers something awful.

I hope you can find the information on the use of electric.
Thanks for all the info.Carol


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RE: anyone here have Fibromyalgia?

Wow, there are a lot of us here! My doctor (internal medicine) says approx. 5% of his patients have it. He put me on cymbalta and flexeril. I have constant pain, but considerably less than before I was diagnosed. When Cymbalta came out, we discussed switching to that but my doctor said that, from what he could see with his other fibro patients, he didn't think it would help me any more than the Cymbalta does. My family is very supportive, but I imagine it is still hard for them to really understand what I'm living with. My sister was recently talking about her walking program & I told her that for me, an ordinary walk feels like I'm trying to jog across a swimming pool. On a good day, that is. On a bad day, it feels like I'm trying to jog through a vat of cold molasses. She was horrified. She had no idea how difficult it is to get through an ordinary day. It's not just the pain and the chronic exhaustion; it's that invisible resistance I'm surrounded with that slows me down so much. It's frustrating because I've always been a fast-working multi-tasker who could take on huge projects & get them done. Not anymore. I'm still learning how to pace myself. It seems like every little thing creates mini flare-ups, but isn't life filled with everyday stresses? How come I can't deal with them anymore? Then there are the big stresses. My Dad died this past July; a cousin died last week. I had a big flare-up and couldn't go to her funeral. My doctor gave me some Darvocet which helped. I didn't take away all the pain, but it made things more tolerable for a couple of days. I'm trying not to count on medication too much. I think this is one of those things where lifestyle decisions is the real key to our comfort. I've alweays been a homebody, so entertaining myself at home isn't really a problem, but there are activities I used to enjoy that I really have to give up. Pushing myself just doesn't pay off.


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RE: anyone here have Fibromyalgia?

I know exactly what you are saying Moommyandme. I'm still on the lyrica but with my doctors "ok" we have upped it to 3 times a day now. In the begining I was real foggy from it, more than the normal fibro-fog, but the fog is not as bad now. Stress can definitly put us in flare up mode. What gets me also is the many facets of fibro, of course the worse being pain and that constant tired feeling, but what about levels of noise, and levels of light? Certain smells or aromas can really set off a flare-up also although it sounds ridiculous to most people. I am glad that the warmer weather will be here soon, as I don't hurt as bad in the summer. On Monday I brought my husband home from an emergency hospital stay, he had a minor stroke, and thank God it didn't affect him to the point of paralyzation, but yesterday I couldn't get dressed, just stayed in pajama's all day, guess it caught up to me, running back and forth to the hospital. I'm so sorry to hear about your dad, I lost my dad a year ago February. Pacing ourselves is the best we can do, don't over do it, you know how much you can do. Wishing you well.
Alberta


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RE: anyone here have Fibromyalgia?

Albertar: I forgot to mention the lights, sounds and smells. I used to have migraines, since I was a young child of maybe 5 or 6. I haven't had one in maybe 6 or 7 years. But now that I have fibro, those same things bother me again, especially if I am already tired or stressed out. It's not ridiculous.


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RE: anyone here have Fibromyalgia?

Hi Mommyandme,and Alberta,

I don't have Fibromyalgia but my daughter does.I posted a viedo on the upper thread,did either of you watch it?

askdrjohnson.com

My daughter found it to be very helpful.

One day she and her family were on vacation in Wahsington D.C.,they had just spread some fresh blacktop on one of the streets and she was sent into a migrain immediantly due to the smell,she had to go back to the hotel and lay down with Imitrex.

Mommyandme,she also can not do a lot of walking,she is consirened about her muscles and what is going to happen over the years because she can not exercise any more.
Have you guys tryed going to a massage theripist,she does that and it really helps,plus her hubby has learned how to work the trigger points.
She also has a hard time with clapping noise,watching tv,and haveing someone talk at the same time,pots and pans clattering,any kind of outside noise,even her children.

Not all Firbo.people have this problem,her doctor gave her a book to read called:

The Highley Sensitive Person,by Elaine Aron.

My daughter loves to garden,but she can only do so much and then has to quit,she is 40 now,has had this the last 8 years.She watches what she eats,no preservitives,especialy MSG. and a lot of other foods.

My heart goes out to you,this is a terriable thing to try to deal with.I wish you well,if thoughts help,mine are with you. Carol


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RE: anyone here have Fibromyalgia?

Hi Carol
I tried to watch that video a few times, it would load but not play through. It cut the doctor off about 30 seconds into it. Hope its not my computer, :)
My regards to your daughter, she is so young to be in so much pain and misery.
Alberta


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RE: anyone here have Fibromyalgia?

Alberta,

I forgot to mention your hubby,i am sorry to hear he had a heart attack,how scary for you both.Thank God he has no after affects.

I know enough about Fibromyalgia now to know the stress you are under will do you in,really does not matter if the stress is happy or sad does it.

Are you able to use any one elses computer for the video,ir really makes a lot of sence and can be helpful.

Thank you for the kind thoughts about my daughter,she is to young.

Carol


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RE: anyone here have Fibromyalgia?

I've been dealing with an unexplained medical problem for 3 years now. I'm starting to wonder if it is fibro. Late this winter, I went off a betablocker for my migraines and ended up in constant low grade pain. I take Cymbalta successfully for depression, but I was still in pain and had almost daily over sensitivity to light, sound, touch, and smells. I visited a couple of doctors during that time that gave conflicting advice/prescriptions. I decided to listen to the specialist and not take the prescription, but to have more tests done. They all ruled out autoimmune disease.

I say this next sentence sarcastically. My hubby had the bright idea I would be cured by Excedrine. So I agreed to take it for a week to quiet him. As much as I hate to admit it, I've been taking it for a month and I feel better. Placebo effect? Lucky guess? Dr. Hubby?

I had almost decided not to persue a diagnosis because I was feeling OK and I hate the depressed hypochondriac treatment I get from my GP. After reading this thread, the sensory and pain characteristics are so like what I'm experiencing that I will keep looking for a diagnosis.


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RE: anyone here have Fibromyalgia?

Hi squirrel,

Fibromyalgia is very hard to diagnosis,there are so many presure points a doctor looks at to deterimn Fibromyalgia
Have you asked your doctor to test you for this.

Migrain headachs are also a common factor in Fibromyalgia patients.
I am sorry for you,pain is no way to have to live.
Did you try to watch the viedo www.askdrjohnson.com

As for migrain headaches:This is a good book,worth looking into,it has helped me, and, my daughter,who does have Fibromyalgia.

Heal Your Headache-THE 1.2.3 PROGRAHM FOR TAKING CHARGE OF YOUR PAIN.by David Buchholz,M.D.

I sure hope you can find an answer fore your pain,it's a good idea to stay away from to many drugs,that can really confuse a person.

Good luck,there are a lot on this thread who can help you. :0)

Carol


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RE: anyone here have Fibromyalgia?

alberta, are you still on the lyrica? My doctor wants to prescribe it for my fibromyalgia but I don't know if it will be worth the cost compared to side effects,level of pain relief, etc.


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RE: anyone here have Fibromyalgia?

Hi every one,
I have not been on since last winter,just stopped by to see what is going on,so surprised to see this post.
As some of you know, my daughter has ( thought ) she had had Fibromyalgia,you can read the top posting i did last year.

I do not know if any of this would apply to any of you, but she has discovered a lot this last year.
I am including a couple of sites you all might want to read,see for your self if any of this will be helpful to you as well.

I would be very interested in your remarkes.

Earthclinic.com

Fluoride Action Network

http://www.calwoodnutritionals.com/

Carol


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RE: anyone here have Fibromyalgia?

Any present posters dealing with this? Carol, how's your daughter doing?


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RE: anyone here have Fibromyalgia?

I had been meaning to answer this, and of course never was motivated enough. When I saw it was active again. I decided to chime in. I was diagnosed with Fibromyalgia 6 years ago about 15 months after I had my daughter. I at first thought it was just postpartum changes, lack of sleep, new mom syndrome. Looking back on it, I've had back problems, migraines, carpal tunnel, GI problems since my late teens/ early 20's. I've always had chronic pains, but the sleep issues,poor concentration/forgetfulness, chronic exhaustion was mind blowing. Leading to many specialists, and many antidepressant trials. I have tried both Lyrica and Cymblata with no significant benefit. I had returned to work part time, but I just couldn't focus to complete paperwork, I'd drive and not know how I got there, my attendance was poor, and the final straw was a patient error. I went on a leave, and 3 grueling years later was approved temporary disability. I have tried many things, PT, massage, many medicines,therapy. And I've seen many specialists. Recently seeing a gynecologists to see if hormones are playing a role in this. Again the answer, it's Fibro suck it up. I'm seeing a new female psychiatrist at present, and she says she likes a good challenge. Well here I am. :) It seems I'm flared the majority of the time, but winters are the worst! And I'm frustrated with the lack of benefit of any treatment, 9+ med trials, and counting. I feel like a shell of my former self, and most days I'm in tears thinking this isn't what my husband signed up for, and it's definitely not the kind of mom I want to be. Life just sucks! Reading the posts here, admiring everyone's gardens, and sense of humor usually brings a bright spot to my day. Even if I can't get motivated enough to plant seeds, or have the energy to work in the garden, I can live vicariously through you all. :) A little piece of my remaining sanity......LOL. Now if I can just remember where I put my seeds, and hope I don't forget where I'm going on the way out to plant them, or where I hid my milk jugs so I would be sure I didn't forget where they were. There are times I seriously think I can't keep doing this.But it takes on glance/word from my little girl, and I struggle on. Here's hoping for some new success. Thanks for letting me vent. Best wishes to all, hang in there!


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RE: anyone here have Fibromyalgia?

Hi all,
Wow I can't believe its over a year since I started this thread. I was on Lyrica most of that time, I've been off it now for the last few weeks, one of the nasty side effects of Lyrica is weight gain, and I need to get the weight off that its put on. I feel better with the warmer weather and will probably stay off it all summer. I don't know if its really a good thing to do, but I've got a very important wedding to attend on May 2nd (my son's) and I'll be damned if I won't fit in the dress I bought. LOL!!!

After reading monipsych's post this morning, I replied to her privatly but also want to state here for those of you reading it, we often feel as if we are loosing our minds, the brain fog is enough to drive anyone crazy. The lack of a good nights sleep is horrible on the body and brain, which still leads me to believe this disease or syndrome really has alot to do with brain functions and probably stems from brain disfunction. Lack of concentration, inability to focus (sort of like ADD, adult deficit disorder) really throws us fibromites into a tizzy. Driving and not knowing exactly where we are and how we got there is a scarey thing!! I constantly find myself talking to myself while driving, "Ok, Alberta focus on what you are doing and where you are going". Certain smells will drive me up a wall, bright lights feel blinding at times, and that includes sunlight. Loud noises throw me for a loop and God forbid there is chatter and music going on at the same time, all I will hear is buzzing and not one word of either the conversation or the music. At times I have to totally laugh at myself, or else the alternative is to cry all the time. Stress plays a large part in how fibromites feel, and I just have to shrug and laugh it off most times, but sadly, all the above symptoms just make up this whole word of fibromyalgia and still no one can pin point what causes it. UGH!!!

Alberta


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