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03-15-2013, 01:50 PM   #1
723crossroads
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Crohn's and Fibromyalgia Support Group

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[B][/Hi, I am an undiagnosed crohnnie again and have fibromyalgia and would like to begin by sharing with you all about mine. Please feel free to add anything you like about your experiences and anything you have found that could help others. I was diagnosed thru a colonoscopy of having crohns in the ileum in 2011. I was on Entocort and asacol. I did really well for about 7 months and then flaring started again. Went to see my GI and he gave me Cholestyramine to control diarrhea. But because of my previous history of Kidney cancer didn't want to put me on a Biologic.I began doing the SCD diet and was very successful with it for a long time. Taking Vit D3 and fishoil, and ginger capsules twice a day. Biotin for hair loss and B12 injections once a month. Then Dr. said my levels were fine, so I take a B complex with c and folic acid everyday with the vit D3.Also Probiotic multi enzyme formula everyday. The Fibro comes and goes. Sometimes I wake up and can't barely walk. It will last for weeks. I still force myself to keep going as much as I can. I whine and complain to those who will listen on here and my hubs! Bless him for he is such a rock for me and supports me no matter what I go thru!I just had a bout with the Fibro running down my right leg into my ankle which felt like nerve pain. I have had nerve pain before. I also get pain really bad in my hands, elbows, shoulders, neck, jaw and hips. I think that covers it. When I am dealing with it, it really helps me to take a painpill or muscle relaxer. I also use heating pads too. Sometimes, I take a hot shower and it just helps perk me up to try and force myself to get up and do something. Because on those days, I would rather just rest. I am hoping the magnesium citrate I just got will maybe help too. My Dr.( Rheumy)
just put me on "Savella" for fibro and I am on day 4. They gradually increase the dose for a week till you are on 2/ 50 mg. twice a day. I will keep you posted as to how it helps or doesn't. So far I have a runny nose from it alot. But, besides that and hot feeling alot, no other side effects. Plz come on and share your stories too! Thanx! TeresaPS, had a colonoscopy two weeks ago and it showed no crohn's. Next he wants to do stool testing and then pillcam.So he said possibly just IBS!!!

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Last edited by 723crossroads; 03-15-2013 at 04:13 PM.
03-15-2013, 04:24 PM   #2
Astra
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Thanks for your edit sweetie xxx
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03-15-2013, 06:16 PM   #3
nogutsnoglory
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I have Crohn's and also secondary fibromyalgia. It really takes a toll on me to not only be flaring but also be extremely fatigued, have full body muscle aches and joint pain and sometimes chills too. Only a nights sleep seems to help but the next night I'm back in pain. Hot showers and baths feel nice but I feel awful after.
03-15-2013, 06:39 PM   #4
Kev
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I don't have fibromyalgia, but I know some who do. Thing of it is, I wondered if LDN could also treat it. Did a quick search, and lo and behold, there have been at least 2 studies out of Sanford saying yes. So, if you have both, it might be worth taking a look at LDN, OK?
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03-15-2013, 07:11 PM   #5
723crossroads
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I don't have fibromyalgia, but I know some who do. Thing of it is, I wondered if LDN could also treat it. Did a quick search, and lo and behold, there have been at least 2 studies out of Sanford saying yes. So, if you have both, it might be worth taking a look at LDN, OK?
Thanks Kev, I didn't know that! I have to wait to see oif the new med my rheumy put me on works.I hope so.
03-15-2013, 07:13 PM   #6
723crossroads
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I have Crohn's and also secondary fibromyalgia. It really takes a toll on me to not only be flaring but also be extremely fatigued, have full body muscle aches and joint pain and sometimes chills too. Only a nights sleep seems to help but the next night I'm back in pain. Hot showers and baths feel nice but I feel awful after.
Do you take magnesium citrate? It is supposed to aid in muscle problems and nerve. I have both and just started since everyone has been talking about it. I'll let you know if it helps but I just started the new med too. So it may be tough to pinpoint what is helping.
03-15-2013, 07:14 PM   #7
723crossroads
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Thanks for your edit sweetie xxx
You're welcome. Everyone always spelled it the way I had it before. Didn't even think about it being wrong!
04-13-2013, 11:37 AM   #8
nogutsnoglory
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I take magnesium aspartate maybe ill switch to citrate.

Does anyone else get these painful zaps for a few seconds to a minute where your bones hurt. It's like being electrocuted very suddenly. I have no clue what that's about.
04-13-2013, 06:27 PM   #9
723crossroads
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Nogutsnoglory,
I get them all over legs and feet but since I have been taking more magnesium it has subsided mostly.
04-14-2013, 10:26 AM   #10
nogutsnoglory
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It's a strange sensation to describe so I can't even really explain to my doctors what's going on. Do you know what it's attributed to? I will get a new mag supplement.
04-14-2013, 10:49 AM   #11
723crossroads
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It's a strange sensation to describe so I can't even really explain to my doctors what's going on. Do you know what it's attributed to? I will get a new mag supplement.
It's from nerves misfiring in our brain. Read about it on websites for neoropathies. But alot of it has to do with lack of magnesium. Unless you eat tons of greens and actually absorb it and take it with your Vit D3, it doesn't work.
04-14-2013, 10:59 AM   #12
nogutsnoglory
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I don't eat any greens but I do juice sometimes.
04-14-2013, 11:02 AM   #13
723crossroads
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I don't eat any greens but I do juice sometimes.
It has to be green leafy veggies or almonds too have alot I read. I drink almond milk so that helps too. I seriously noticed a bug diff. since I have made these changes. let me know how you do, ok?
04-14-2013, 11:07 AM   #14
723crossroads
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I failed to mention before that I had to quit the drug I was taking for fibromyalgia, it made me sweat and have heart palpitations so bad. Plus, felt very weirded out on it. Effexor seems to be the only type I can tolerate. But it is just me. I am very sensitive to drugs. I can't take nsaids because of previous kidney problems, so it is very limiting. But taking the extra D#3 and magnesium has made a marked diff. and I recommend it. Thanks to David who told me about it!
04-19-2013, 08:47 AM   #15
nogutsnoglory
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I am considering Zoloft and Celexa. My Prozac is likely causing severe dizziness and balance issues.
04-19-2013, 08:51 AM   #16
723crossroads
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I am considering Zoloft and Celexa. My Prozac is likely causing severe dizziness and balance issues.
I hope one of them work for you. Are they recommended for Fibro too?
04-19-2013, 11:44 AM   #17
nogutsnoglory
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My main thing with them is control of my anxiety. I think 2 SSRI's are also used for pain management with fibromyalgia. The thing is they are less effective for anxiety. My biggest issue is getting more energy so if Prozac is the problem maybe another will do.
04-19-2013, 11:48 AM   #18
723crossroads
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My main thing with them is control of my anxiety. I think 2 SSRI's are also used for pain management with fibromyalgia. The thing is they are less effective for anxiety. My biggest issue is getting more energy so if Prozac is the problem maybe another will do.
For SOME people Celexa gives you energy. But only some. My x sister inlaw lost 30lbs. from it but she is hyper to begin with. I am laid back, so it may not affect me the same way.
04-19-2013, 10:30 PM   #19
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I'd LOVE some energy! I am always so tired. I feel 90.
04-19-2013, 10:31 PM   #20
723crossroads
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I'd LOVE some energy! I am always so tired. I feel 90.
I'm tellin ya, try extra vitD3 and magnesium citrate together.
04-26-2013, 02:39 PM   #21
723crossroads
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Hello all I have Crohn's Disease and have started taking IdrasilRx recently and it has help me greatly manage my symptoms. This medication is pure cannabis extract in pill form and is also indicated for Neuropathic pain and Musculoskeletal pain. Please check it out it could help you too!
IdrasilRx.com
Thnx MiguelG9000!!!
05-14-2013, 02:33 PM   #22
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Hello, I have Crohns, Fybro, Diabetes, high cholesterol, bursitis, and bone spurs. At the moment I'm taking metformin, amyril, vit D, fish oil, boswalla, Valerian , melatonin and a low does of aspirin. about to start cholesterol meds. I've been through 8 doctors in 5 years. I finally found one that would listen and she's moving. So bummed. My internal quack, I mean specialist, just wants to put me on drugs that make me really sick and call it a day. Not going to happen. My rheumatologist thinks my stuffs not serious enough for her to bother, doesn't matter that I'm in constant pain. ok, I'm done whining. I just started the "eat right 4 your type" diet, it seems to be helping. I feel a little better and the bleeding (my colon) has slowed and the pain in my gut is mostly gone. After only a few weeks I'd say that I'm about 30 to 50% better, depends on the day and how much sleep I got. Has any one else her tried this?
05-14-2013, 04:10 PM   #23
723crossroads
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No but will check it out! Thanx!
05-20-2013, 03:24 PM   #24
723crossroads
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Oh, you meant for you blood type! Yes, I have the book down in the basement.
They are all just a healthy eating plan some a little diff. than others.
05-21-2013, 10:34 PM   #25
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Hi my name is Aaron

I'm currently at the age of 17, I was diagonse with crohn's in april 2011 when I was 15. After severe pains and constant runs to the hospital, two years later I still dont know what it really is. My GP is a total d*** he's never really sat me down had a good on how to make my illness better. Crohn's has messed my school grades up aswell during 2011 I had to take a year out of school. I have the infusion drips once every month, I'm a teen so i have pressure of gourging food at times which I do. I'm on tenntablets a day most of them are the size of horse bullets. I really want to travel the world at the age of 19/20 but I have to prove to my parents that I'am well enough to do so

My counciller however gave me this address where I can talk to others about this. It would b good to get dietry advice. Like I said I'm 17 this s*** was pretty scary when I was 15 and didnt know what was going on. Thanks
05-21-2013, 10:47 PM   #26
723crossroads
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Aaron, please go on the main forum page and check out the diet and fitness section. There are a few different diets you can try. See which works best for you. Everyone is different as to what sets them off. There is "Low residue diet", 'SCD diet',and 'Paleo diet'. For me when flaring, the low residue was best. For maintenance eat as natural and unprocessed as you can. No preservatives as much as possible. I know it is so difficult. But that is key. At least for alot of us. Hope this helps you Aaron.
PS Welcome to our forum! Please check out all the threads and learn as much as possible!
05-21-2013, 11:04 PM   #27
nogutsnoglory
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Has anyone tried Wellbutrin for their fibro? I'm thinking of trying it to combat SSRI fatigue but hear its used for other fibro issues.
05-21-2013, 11:09 PM   #28
723crossroads
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I was on it and it didn't help for fibro. I am now on effexor xl and it did seem to help some. But upping my vit. D3 and magnesium citrate and fishoil etc... have helped the most.Bcomplex too.
05-21-2013, 11:19 PM   #29
nogutsnoglory
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Did Effexor just help with depression or in other ways as well? Glad to hear you found the right drug for you.
05-21-2013, 11:23 PM   #30
723crossroads
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Effexor seemed to help some with the fibro pain I get. Depression too. Honestly though, I am trying to get off of it because it has caused me weight gain and you have to taper very slowly or you can get flu like symptoms. It doesn't stay in your system like seratonin uptakes alone do. This has noripenpherine too and you can have withdrawal type symptoms.
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