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Crohn's and Fibromyalgia Support Group

[/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.:eek: 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!:award2: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! Teresa:ghug:pS, 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!!!:ymad:
 
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nogutsnoglory

Moderator
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.
 

Kev

Senior Member
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?
 
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.
 
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.
 

nogutsnoglory

Moderator
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.
 

nogutsnoglory

Moderator
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 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.
 
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!:thumright:
 

nogutsnoglory

Moderator
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.
 
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.
 
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!!!
 
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.:voodoo: 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. :poo: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.:ybatty: 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.:banana: 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?
 
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.
 
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
 
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.:ghug:
PS Welcome to our forum! Please check out all the threads and learn as much as possible!
 

nogutsnoglory

Moderator
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.
 
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.
 
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.
 

SarahBear

Moderator
I'm in need of a bit of advice from you all. :)

Last summer / fall, I started having some new symptoms. I've been diagnosed with Crohn's, IBS, and possible endometriosis (it can't be diagnosed for certain without surgery, and we're trying to control the symptoms and avoid surgery). These symptoms don't fit any of those conditions.

My doctors seemed content to blame it on Crohn's or endo (whichever would mean it was out of their hands) even though that made no sense. Before I could convince anyone to do further testing or anything of that nature, the symptoms gradually decreased and went away.

About two weeks ago, the symptoms started slowing coming back.

The symptoms are:
• Extreme tenderness / pain / sensitivity throughout my torso. It's centered in my stomach, but spreads to my back and breasts.
• Fatigue. I've started sleeping more than normal, and getting tired much, much more easily. Most of my fatigue is physical exhaustion rather than a need for sleep, but both do occur in excess. The physical exhaustion is fairly intense - thirty seconds of walking and I'm out of breath. The last time these symptoms were occurring, I gave up blow-drying my hair because I just couldn't hold the hair dryer up for more than a minute.
• Joint, muscle, and surface pain throughout my entire body. Again, it's mostly centered in my stomach but it does occur everywhere. This pain in my stomach is different from IBS-like pain. It's not intestinal - it doesn't feel as if it's that deep. It's also fairly intense around my bottom ribs.
• Difficulty remembering / focusing. This could certainly be a result of dealing with the other symptoms, though.
• Abdominal pain, nausea, and other IBS-like symptoms. I do have these symptoms normally, but they intensify.
• Morning stiffness and pain. My lower back and sometimes stomach are very tender and painful when I wake up. This only recedes after I've been up and about for a little while.
• Dry eyes and skin. My eyes get very sore throughout the day, and more so at night.
• Chest pain and tightness.
• Rapid and fluttering heartbeat. This usually just occurs when I've pushed myself too far physically, but it does come out of nowhere sometimes.
• Small unexplained bruises on my thighs. These do occur regularly, but they get worse when I feel worse.
• Sore throat and tightness.
• Dizziness / loss of vision upon standing up. It's sort of like I'm about to pass out but it doesn't go that far. I sometimes get dizzy at other times as well, but the loss of vision is only when standing. The further I have to go up, the worse it is - if I were sitting on the floor, I sometimes literally have to stop and hold onto something for fear of passing out or falling. If I were sitting in a chair, it's less intense.

I also developed a couple mouth ulcers just before and as these symptoms were starting this time. I did see a dentist and was told not to worry unless they didn't clear up within ten days, but they did, so they may have been unrelated.

My mother has been diagnosed with fibromyalgia, which is what originally got me thinking along these lines. I have an appointment with my gastroenterologist on the ninth and plan to mention all of this to him, but I doubt he'll do anything - it's not really in his realm of expertise anyway. I'm also going to call my GP on Monday and see when I can get in with him, as that's probably where I need to start.

So, does this sound to you all like it could be fibro?

Thanks in advance. 
 
Maybe some of the symptoms sound like fibro, but mostly sounds like you are lacking in magnesium and B12 etc... Fibro does cause pain at 11 points. Right above your sternum on both sides, right between shoulder blades, hips, elbows, knees inside, ankles. Mostly joint areas and just pain deep aching for no reason in your legs and arms, but i never got it in the stomach, but have it in my back. The tiredness does come with it for sure too. But crohn's when flaring has alot of the symptoms you described for me. Hope this helps!:hug:
 

SarahBear

Moderator
Thanks for the response, Teresa!

The thing is, my Crohn's isn't flaring and the only deficiencies I have are mild B12 and iron deficiencies, alternating. My levels haven't been checked recently (not since December or so, if I remember correctly), but they did check them multiple times last time I experienced these symptoms and there was nothing severe or concerning.

I'm fairly familiar with fibro at this point, and I do know that all of the above are possible symptoms. My mother has it, and said a friend of hers also has it, and it's centered in her abdomen. Her symptoms are very similar to what I'm experiencing. It does have a genetic component as well, so that'd put me at greater risk.

At this point, I don't know of anything else that could cause these symptoms. Granted, I'm not a doctor so that means very little.
 

afidz

Super Moderator
Sarah, weren't you telling me there is a digestive tract fibro or something like taht? that could explain why its in your torso.
Crossroads, do you have a source talking about those points or is that just where you get the pain? I don't know much about fibro at all, thats why I am wondering
 

SarahBear

Moderator
Afidz, it's my understanding that it can be focused in certain parts of the body, and the abdomen isn't an unusual one.

The tender points are basically places that should hurt when poked if you have fibro. Like Teresa said, at least 11 out of the 18 should be painful. This explains them:



However, it's again my understanding that this is a somewhat outdated way of diagnosing and some doctors don't check the tender points anymore. I haven't had mine checked, but I do generally hurt when poked. :p
 
Sarah, weren't you telling me there is a digestive tract fibro or something like taht? that could explain why its in your torso.
Crossroads, do you have a source talking about those points or is that just where you get the pain? I don't know much about fibro at all, thats why I am wondering
My Rheumy checked my points and they did hurt when poked. It can also be deep pain aching in weird places. I have myosis too, like my muscles jerk alot.
I do get lower abdominal pain like menstrual cramps and always wondered what from because i no longer have periods. Is that where you have cramping?:voodoo:
 

SarahBear

Moderator
Yeah, that's the area that is the most painful - my lower abdomen and around my bottom ribs. Strangely, that's also where my pain from Crohn's is, but this is definitely a different kind of pain.
 
Maybe they will put you on something for fibromyalgia. I couldn't take the meds because of side affects I couldn't handle.I tried several and they weirded me out so bad. I take an antidepressant and the Dr. thinks it helps. I guess it helps somewhat, but still have alot of pain. I hope you find something you can take Sarahbear!:hug:
 
A couple of questions about Fibromyalgia, from someone who is in the process of getting diagnosed.

Is Fibromyalgia a complication of all forms of IBD? I'm pretty sure I don't have Crohns, but it could be any other form of IBD or IBS.

What are the early onset symptoms of Fibromyalgia? The pain I'm experiencing is exercise related, but definitely stronger and longer lasting. It is also associated with what I'm perceiving to be an exercise related flare. I do have some general low level stiffness and pain otherwise, but it is very mild.
 
:ghug::ghug:Hi DLTooley

Sorry to hear you are in pain!

Do you have a good rheumatologist?

I'm not an expert but my Father in Law has had FM for 30 years, I do know that my kids have joint hypermobility which can causes FM, but I assume inflammation from IBD is a crossover and people with IBD can have arthritis.

We did a lot of research on Connective tissue disease and FM before Greg got very sick with Crohns looking for an answer for his chronic illness. Keep looking for answers
 
I've been doing a bunch of reading today - it would likely be non-rheumatoid arthritis. I'm not sure if I've got my terms write, but I think that is synonymous with 'arthralgia'. At the moment I'm guessing I've got microscopic colitis induced by Yersinia, last winter. I've had bloody stools, but only on one flare, of several. My recently diabetic dog contracted pancreatitis from the same source and passed away.
 
Hi DLTooley

Wow I have no idea about any of those things. I hope you can find a good doctor who is willing to do the research alongside you. :)
 
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A couple of questions about Fibromyalgia, from someone who is in the process of getting diagnosed.

Is Fibromyalgia a complication of all forms of IBD? I'm pretty sure I don't have Crohns, but it could be any other form of IBD or IBS.

What are the early onset symptoms of Fibromyalgia? The pain I'm experiencing is exercise related, but definitely stronger and longer lasting. It is also associated with what I'm perceiving to be an exercise related flare. I do have some general low level stiffness and pain otherwise, but it is very mild.
Mine is pain that goes deep into the tissue into my back and my upper chest. Also hips are very sore and inside of knees to the touch. Go online and google fibromyalgia points. If you have 11 of the 18 tender points to the touch, then they consider it a diagnosis. It is very upsetting because you can be fine one day and then wake up and have pain somewhere throbbing for no reason. You can have pain so bad, you can barely move without painmeds. I have arthritis and myosis too, so I just live with pain all the time. It is difficult.:(
 
Thank you for starting this group. Im feeling bummed out. I was dx with crohns last year along with iritis. Prior to that I was healthy except for insomnia and ibs. Since my dx Ive been dx with cervical stenosis, herniated disc in my neck, bladder urgency and some other pain that runs around. My hands and elbows are mostly affected. I have trouble typing and writing. My right arm will go numb at times.

A few weeks ago I started having a lot of pain in my neck, arms and hands. They felt weak. I walk around in a fog and I'm tired most of the time. Sometimes I get a break in the day and will feel like my old self, but usually I feel like I'm coming down with something. I used to feel better when I worked out now I usually feel worse.

I know I need to go to a rheumatologist but I'm tired of doctors and I'm tired of myself.

Just venting. Thanks
 
Mine is pain that goes deep into the tissue into my back and my upper chest. Also hips are very sore and inside of knees to the touch. Go online and google fibromyalgia points. If you have 11 of the 18 tender points to the touch, then they consider it a diagnosis. It is very upsetting because you can be fine one day and then wake up and have pain somewhere throbbing for no reason. You can have pain so bad, you can barely move without painmeds. I have arthritis and myosis too, so I just live with pain all the time. It is difficult.:(
My bodywide pain was a one time occurrence, after a particularly active weekend. I'll try the pain points if it happens again. THANKS!
 
Thank you for starting this group. Im feeling bummed out. I was dx with crohns last year along with iritis. Prior to that I was healthy except for insomnia and ibs. Since my dx Ive been dx with cervical stenosis, herniated disc in my neck, bladder urgency and some other pain that runs around. My hands and elbows are mostly affected. I have trouble typing and writing. My right arm will go numb at times.

A few weeks ago I started having a lot of pain in my neck, arms and hands. They felt weak. I walk around in a fog and I'm tired most of the time. Sometimes I get a break in the day and will feel like my old self, but usually I feel like I'm coming down with something. I used to feel better when I worked out now I usually feel worse.

I know I need to go to a rheumatologist but I'm tired of doctors and I'm tired of myself.

Just venting. Thanks
I totally understand hon. I have been there and still fight the pain. I do take painmeds everyday or couldn't do half of what is half ~of what I used to do! if you catch my drift. I too have pain in my shoulders and elbows and hands that is terrible. I cleaned as a job for yrs and yrs. I'm sure it has worn me down there. The knees are just old but never hurt before the diagnosis of crohns.It has totally changed my life. I am 1/3 what I used to be physically. I do the best I can and accept that life is not always easy and sometimes it's downright difficult. But we have to keep on trying our best to keep doing what we love. Taking the supplements and trying to do what we love .May you find peace and God's love as a comfort as I do.:hug:
 
Hi I just joined this site and am checking things out. I'm in a few FB support groups for fibro which I love my mates in as it is world wide. I recently dx with crohn's after seeing a new rheumy. my dx came through 12 viles of blood that he took. I neva knew it could b dx that way. I have been on Cymblata for the past yr of the fibro and would cover my pain until about 2 months ago. it definitely help with my mood as I was suicidal after loosing a job and being on a combo of amityrpiline and cymblata. I have recently start taking methadrextadate or however u speel by inject once a week due to the crohn's so far so good but i'm starting to recognize the difference in flares. hope things go well 4 u. any advice any of u can give would be wicked pissah. yes i'm from new england
 
New to the forum. Feeling frustrated with doctors who bounce me back and forth. GI doc passes me to rheumy and vice versa. Basically, they do not know what is crohn's arthritis and what is fibro. I am on humira, sulfasalazine, arava, prednisone, lyrica, and flexiril...I am in much pain, and need to use a walker or wheelchair. I am so tired all day. Just want relief..want to be me again.
 

nogutsnoglory

Moderator
I'm on lyrica now and started twice daily. So far nothing but my memory seems a tad sharper and anxiety went down a smidge. I'm really hoping this and nuvigil restores my body.
 

valleysangel92

Moderator
Staff member
I didn't realise this was here, I was diagnosed with fibromyalgia in May after years of joint pain. I take 20 mg of amitryptiline and have been pretty much left too it.

At the moment I'm struggling with exhaustion and my joint pain has really increased recently. The issue is I've also just started azathioprine and trying to work out what's causing each thing is a bit of mine field.

Apart from being put on amitryptiline and then having my dose upped I've had very little input from my GP or any doctors regarding my fibro. So feeling a bit lost currently.
 
I have had Crohns, well symptoms started at age four. Was not diagnosed, although suspected, until my thirties. I also have Fibromyalgia. I have also just started taking the magnesium in hope that it is going to help with some of the lack of sleep issues during the night. Wow!!!! If I don't sleep well at night, I pay for it for the entire next day. I no longer take Crohns medications, long, horrid details, not going there again and just refused the remicade and told a third resection is no longer an option.

Making it clear, I am not recommending that anyone stop their meds and to continue with their doctors advise. These are my decisions and not my recommendations.

The magnesium did help me sleep better, but in researching it further I have to make sure I'm taking the correct amount of calcium and vitamin d and potassium. So off to a dietician. Above everything, the one thing I am having trouble dealing with is the exhaustion. I can't stand it. Although I have allot of loving family, not one person is sympathetic to how tired I am and understands the disease. Amazing right? So allot of lecturing comes my way every day!! :rof:

So looking forward to seeing a professional, making sure i'm on the correct amounts, taking everything with the magnesium that helps to absorb it, and work around the meds I am on. Also, certain forms of magnesium work differently. That's another question to ask, what best fits our different symptoms.

:ybatty::ybatty::ybatty:
 
I'm hoping that better rest will mean less body pain. Wow!!! Stops me in my tracks. More tests booked CTScans, more ex rays, MRI. Just had 2nd colonoscopy in six months, with an endoscopy thrown in. :ywow: This week its going over my daily journal with therapists.

There is time for vacationing when? Helping my body pain how?

Well, I still wake up absolutely positive every morning!!! I feel great about that at least!!!:rosette1:
 

nogutsnoglory

Moderator
Magnesium is great but it makes me run to the bathroom because it's a laxative. I need to figure out a safe amount so I don't goto the bathroom.

What's the relationship between mag, calcium and d that you need a dr for?
 
I read that the pill form of magnesium doesn't digest as well and most binds to what's in the bowel that's why its a good laxative. There is 1:1 mag/calcium and 1:2. From what I have read its not recommended to have the double dose of calcium, so the 1:1 is best.

Can also get the mag in powder form, with or without calcium. The powdered form is easier to digest and doesn't have such a laxative effect, (great for a boost to sleep better) but I guess we need the calcium to digest it. :thumright:

Have to make sure to take the mag tablets two hours before or after meds, or down they go as well, allot to remember...:shifty-t:

Too much vitamin d is not recommended for people with over active immune systems. Soooo, wow, that's why I'm going to a dietician to make sure I'm getting this all right, or why do it at all?

This is through my researching and personal experience. We all know each one of us with these diseases are sooooo different. :ack:
 

nogutsnoglory

Moderator
Vitamin D3 is highly recommended for crohns. Haven't heard of too much being bad for autoimmune disease as long as it is in the safe range and you don't get toxicity.
 
Hi there,

My name's Keenan, I'm new to this forum and even newer to this support group. I haven't been diagnosed with Crohn's or Fibro (yet to either) by any accord but I was hoping for a chance to say hello and pick everyone's brain if that's alright :)

I haven't experienced much in the way of sever or extra sharp nerve pain, but from time to time I'll experience random aches or pains in several known pressure points ( i.e. along my neck/sternomastoid, or intramuscular pains along my chest just adjacent my breastbone)

Now I know better than to try and self diagnose, or search online for answers to do just that, but I was wondering, is it imperative that the pain with fibro be intense, sharp, limited to one side of your body, absolutely come with headaches. Do you feel joint pressure, or heaviness in certain areas?

Thank you for taking the time to read over this and respond :) I appreciate your bravery and generosity in sharing your story!

Hope everyone is well!
 
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