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jenna12186 posted:
Hello! Im new here and am hoping by joining this group, i can get some advice and much needed additional support i need to battle FM. My name is Jenna, I am 28 years old and have had FM since age 17. It triggered when i was in a severe car accident and ive had widespread pain, bad IBS, and migraines since. I am lucky to be married to a wonderful woman who supports me and takes care of me when i cannot take care of myself, but i still struggle, especially emotionally. Its hard to work but i have to and i just need a little extra support from people who get it. My insurance doesnt cover Savella or one of the other meds my doc wants to put me on, im on tradadol which helps a little but not a lot and i wont take cymbalta because ive seen all its bad bad effects. Does anyone else have bad IBS with their Fibro?
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missist responded:
Hi Jenna Welcome. I did have IBS with mine back when I was around your age.. it cleared up for some reason-- fibro is a mysterious thing. Mine was occassional and it was spastic colon style-- like must go now and severe pain. I never had the daily kind of problems. and because of the pain--I had to have RX meds to relax it. But because I didn't get it often I had to get a new RX every time and that meant a trip to dr.

My insurance is a pain in the butt period. won't pay for any RXs but generics --which is stupid-- they are all cheap.

Anyhow I use gabapentin most of all-- it is cheap. it is similar to lyrica. I use double dose at bedtime and one in the morning. ITs a low dose -- I'm guessing around 300 whatever unit they are.

I happen to also have arthritis so I also use celebrex--which is seriously expensive and ins wont pay.. duh.

I don't think you need it for fibro really.

Antidepressants are all different-- the older trycyclics worked well for me-- nortryptiline was good.

My dr wants me to try cymbalta I need to look into it cuz I am looking for an antideppesant --for depression not pain-- but if it helps with pain--cool. It has to be a generic--so if there isn't one I'm not doing it.

many of us use different things and there are cheap meds out there.

Gabapentin is maybe one of the easiest-- makes you a little tired-- but otherwise I no side effects and no dangers I know of.

Vitamin D is big-- have your level checked.

have it checked in fall too--and winter--cuz it changes

it helps with pain and mood.

Vitamin B's I think are a def. boost.

Others wil chime in. I'm sure this evening or so... hang in there!

God bless!
Mary
 
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dawncostella replied to missist's response:
I take Cymbalta and it has helped me a lot. There is a generic for it. It just came out and it has worked as well as the original for me.
 
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missist replied to dawncostella's response:
Jenna--- well maybe give that cymbalta a shot? Dawn--thank you for that! helps alot I need an anti-d that won't first knock me out tired. Dr said that is the one.
 
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Anon_10089 replied to missist's response:
Mary and others-

I have taken wellbutrin, which has a generic. It is not usually indicated for pain reduction but I find it helps a lot with energy and the fog. Also, it doesn't usually cause weight gain like many of the other anti-d's. In fact, it often causes a little loss.

I have close family members with true, clinical depression and I feel like I do not have that. But I do get depressed, often after a long flare--like last year I had a bout with near chronic migraines. I call it more of a "situational depression". I went back on the wellbutrin and almost immediately felt better. It's also one that is not difficult to come off.

Just my two cents. Cymbalta does help many with FM, from what I've read. And Mary, wellbutrin does have a slight risk of lowering the seizure threshold for people, so maybe your doc wouldn't want you on that anyway.

--JR
 
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Anon_10089 responded:
Hi--I also responded to another post of yours about migraines. There is a gal here who posts most days, Linda R, who I believe just found a good IBS med. Perhaps she'll see this and share.

It seems like the medical community is just figuring out the complexities of our "guts". It is so overwhelming with the pain and fatigue we face everyday but have you gone the more holistic route, with maybe doing an elimination diet? Now, in saying this, I never have and would find it very hard, so I'm just putting it out there, not preaching it!!

Ugh, I hate the emotional aspect of FM. I hate feeling so weak sometimes! But then I remember that we are actually really strong. Only we know what it takes for us to get through each day. It takes a lot of strength to go to bed each night knowing we'll wake up tired and in pain. It takes strength to get out of bed, knowing we'll be tired and in pain. And so on. I'm in my early 30's and have also had this for a long time. It's hard to be around peers that have the boundless energy we're supposed at this age. But most of the people I know would crumble if they just had a few bad nights of sleep!

--JR

Also, have you tried probiotics? I prefer to eat my nutrients--I feel like vitamins I swallow do very little for me personally. I found so good and quick benefits from drinking Kombucha tea and you can make it yourself for not much money or trouble.

I've also heard really good things about the GAPS diet, although it is pretty strict and you have to be on it for I think a couple years. But from what I've read, it slowly and permanently heals your gut. And maybe there a couple principles from it you could try and start slowly.

From what I've heard, anything to do with the gut, and especially bad cases of IBS take a long time to heal or to turn around. That must be so difficult because you would have to give something a try for awhile to know if it's working. Again, I'm just putting this stuff out there--I'd be totally overwhelmed to start a strict diet.
 
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missist replied to Anon_10089's response:
JR--thanks. I'm not using any of the seizure meds neuro rx'd anymore. I plan to ask her to give me a seizure preventing dosage of gabapentin--or don't treat me. I know that sounds a bit demanding but I've had 4 now and I could not tolerate them and they scare me--and my seizures were not near as bad as the drugs. So far no new ones. fingers crossed and its May before my next apt. I did call and leave message I was stopping the last one. So we shall see... I prob need to discuss that with my primary before starting one. I do have clinical depression I was dx'd with that before fibro--but for many years I have gone w/o anti-d's and weathered life sort of depressed. I want to be done with it. I need to live happier if I am to tackle all these things better at my age so I can live well for what is left and enjoy my grandkids etc.
mary
 
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missist replied to missist's response:
Jenna-- did not mean to highjack your thread here--- there's some good info so hope you are reading. Mary
 
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fibroinsd responded:
Hi Jenna...welcome...

Please do look at the section to the right called tips and resources..and look for the post called "member toolbox"...people have written there things that have helped them..

For me..having a good heating pad has been helpful...and also vitamins..
especially a good multi,
A B-100 COMPLETE (they are more expensive, but I think worth it.)
D
Magnesium

I did take Cymbalta for a year...and it was a great help..and when I found it wasn't working as well, I went off of it SLOWLY...and I didn't have any trouble.. I didn't have terrible side effects, but others have...so no matter what you take, you just have to be careful and if you feel like the side effects are bad...talk to the doc about how to get off of the med.

My IBS seems to come and go...I hope yours will get better..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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jenna12186 replied to fibroinsd's response:
Thanks for replying. My pain is pretty constant and I've learned to deal with it most times just the migraines and IBS are the worst part. Its like one week I'm km..going fine and then I'll be completely bout up and bloated and have a stomach every day for a week or two and then when I go its painful and I get bad spasims that leave me unable to work. I've tried softeners, more fiber, smoothies and nothing helps. I used to be on zelnorm when I was 19-20 and it was a savior but they recalled it and I've been forced to experiment since. I've been reading a lot about this Indian powder that's supposed to help..its comprised of three fermented fruits so we will see if that helps...if not I may be forced to turn to meds.

As for fibro meds..like JR said its ridiculous with costs etc..I've tried wellbutrin and it helped depression and anxiety a bit but not pain. I think I just need a full workup Cuz since I went on celexa and my thyroid meds I've gained a lot of weight, which helps nothing. I'd be happy with just getting my gut working.

I haven't tried the GAPS diet. Like you said its hard and I already eat a vegetarian and lactose free diet..anyways your support is always appreciated..everyone.
 
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fibroinsd replied to jenna12186's response:
It is interesting..my doctor wanted me to try wellbutrin once and it was not a match for me ! I didn't like it at all..of course, that has been awhile, so I don't remember why..but I do remember not liking it...it is so frustrating having to try and see how you react to different meds..

cece
Let's put the fun back in dysfunctional !- Mary Englebright


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